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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.
- Health services research
- Neurology
- Growth
Data availability 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.
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Children with neurodisability commonly experience eating, drinking and swallowing difficulties (EDSDs) that have physical and non-physical causes.
EDSDs have a considerable impact on the child and family.
Previous results determined a wide range of parent-delivered interventions that are recommended by healthcare professionals and used by parent carers to support young children with neurodisability and EDSD.
WHAT THIS STUDY ADDS
Findings in this study describe current intervention practices within the feeding multidisciplinary team (MDT) and suggest that specific healthcare professions may recommend and use interventions outside their traditional professional roles, demonstrating interdisciplinary working and the versatility of feeding teams.
Results support taking a child-centred approach to intervention use, considering not only a child’s main neurodevelopmental diagnoses but their whole context.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Findings from this study supported the creation of the Focus on Early Eating, Drinking and Swallowing Toolkit, an informative shared decision aid tool used by parent carers and the MDT.
The Toolkit is now being used in the UK NHS; training for professionals to use the Toolkit in their practice is now available through: feeds@ncl.ac.uk.
Introduction
Adequate nutrition is important for the development, growth and health of children.1 Children with neurodevelopmental conditions and children with neurodisability can often have eating, drinking or swallowing difficulties that impact their ability to meet their nutritional requirements, leading to impaired growth and poorer health outcomes.2–4
The FEEDS (Focus on Early Eating, Drinking and Swallowing) review aimed to find and appraise the evidence on interventions for eating, drinking and swallowing difficulties (EDSD) for children with neurodisability and their use, and to determine which interventions are currently recommended by National Health Service (NHS) professions; and which are used by parent carers.5 These aims were met by using multiple study methods including systematic reviews, focus groups with stakeholders, surveys and consultation workshops.5–7
The FEEDS national survey aimed to ‘establish current UK clinical practice in relation to the interventions recommended and used for EDSD in young children with neurodisability and the outcomes measured, from the perspective of parents and health and education professionals.5 Participants included (1) healthcare professionals (HPs) working with children with neurodisability and EDSD and (2) parent carers of children with neurodisability and EDSD. They were asked about their recommendation (professionals) or use (parents) of 25 interventions, perception of those interventions and the importance of specific outcomes. Previous analysis of responses determined intervention use by EDSD aetiology (physical, non-physical, and mixed physical and non-physical impairment) and intervention use by HPs.5 6 Subsequently, practitioners asked about intervention use by HP type and by condition. We conducted analyses in response to practitioner questions and to support development of the FEEDS Toolkit. The FEEDS Toolkit, which describes the interventions, how to use them and ways of measuring their impacts, was subsequently developed. The Toolkit provides a way to facilitate a shared decision-making approach for HPs and parent carers to determine which interventions to try to achieve specific agreed outcomes regarding feeding.
The findings from this study aimed to further analyse the national survey responses from the FEEDS review to inform on current intervention practices within the NHS and determine whether intervention use varied by children’s main diagnosis and whether intervention recommendations varied by HP role.5 8
Methods
Parent carers of children up to the age of 12 with neurodisability and EDSD and HPs working with children and young people aged 0–18 years with neurodisability and EDSD were recruited to the FEEDS national survey via parent carer networks and charities and relevant national professional bodies. Multiple sources of recruitment were chosen to maximise number of participants and to reduce bias.
The survey was designed by the research team following best practice in survey design.9 Data were collected regarding participant demographic characteristics, experiences of supporting children with EDSD, interventions (usage, effectiveness, acceptability) and important outcomes. Most questions offered fixed-choice responses, with opportunities for free-text responses. Recruitment was from March to September 2018 and the questionnaire was sent via email (hosted on Qualtrics10), with paper versions also available. Please see online supplemental material 1 for the previously published questionnaire for HPs and parent carers.5 6 The process leading to the creation of the FEEDS national survey and full recruitment strategies are outlined elsewhere.5 6
Supplemental material
Exemplar parent-reported main neurodevelopmental diagnoses representing varied aetiologies of EDSD, and with over 10 respondents, were selected for analysis: cerebral palsy (CP n=30), autism spectrum disorder (ASD n=183) and Down syndrome (DS n=69). Information about any additional neurodevelopmental diagnoses was not requested. HP roles were selected for analysis where data were available for more than 10 respondents: speech and language therapist (SLT n=131), occupational therapist (OT n=63), physiotherapist (PT n=57), paediatrician (n=50), dietician (n=40), nurse (n=32) and health visitor (HV n=14).
Fixed-choice responses regarding the participant’s use of the 25 interventions included (see online supplemental material 2) were analysed using SPSS V.29.0.1.0.11 Statistical analysis was not conducted on the data due to the small cohort sizes. Missing data were not included in analysis and percentages of valid data were used to compare responses across cohorts and interventions.
Supplemental material
Patient and public involvement
Stakeholder involvement in the development of the national survey has been previously reported.5 7 Parent carers and HPs participated in FEEDS review as coapplicants for funding, as study investigators and via advisory groups.7 Stakeholders continued to be involved at further stages of the FEEDS review (eg, national workshop and dissemination). Parents and professionals have also contributed to FEEDS Toolkit design.
Results
Participant characteristics
Data on included respondents’ characteristics can be seen in table 1. 86.8% of HP worked within the NHS, and 93.6% of parent-carers were mothers. Most (88.3%) respondents identified their ethnicity as ‘white’. All regions in England were represented; there were a small number of responses from other UK nations.
Participant characteristics
Parent carer responses
Most parent carers reported using multiple interventions, with a similar mean number of interventions used in autistic children (6.3, SD=4.0), children with CP (mean=6.8, SD=4.3) and children with DS (7.0, SD=4.6).
Many interventions were used commonly irrespective of main neurodevelopmental diagnosis; for example, food and drink modification (ASD 50%, CP 67%, DS 83%), desensitising for food avoidance (ASD 55%, CP 38%, DS 61%) and modification of utensils (ASD 38%, CP 42%, DS 57%). However, some interventions were more commonly used with children with a specific condition: positioning (ASD 23%, CP 85%, DS 70%), strategies/programmes aimed at changing behaviour at mealtimes (ASD 52%, CP 8%, DS 11%) and visual supports (ASD 58%, CP 0%, DS 21%) (table 2).
Intervention use by child’s main diagnosis
HP responses
HPs used or recommended multiple interventions. SLTs, paediatricians and OTs used the highest number of interventions: SLT mean=13.9 interventions (SD=4.0), OT 12.7 (SD=3.6), dieticians 12.3 (SD=5.3), paediatricians 11.1 (SD=6.0), and HVs, nurses and PTs recommended fewer interventions (9.4 (SD=6.9), 7.5 (SD=4.0), 5.9 (SD=4.9) respectively).
Some interventions were commonly recommended by multiple HP roles, for example, positioning was recommended by 97% of SLTs, 94% of OTs, 100% PTs, 73% of paediatricians and 69% of nurses. However, some interventions were more commonly recommended in the context of specific HP roles, for example, energy supplements (100% of dieticians, 78% of paediatricians) and waiting for cues (75% of SLT, 82% of HV). A small number of interventions were rarely recommended by any HP role, for example, sensorimotor therapy (7% of SLT, 6% of OT, 1% of HV and 0% of dieticians, PT, paediatricians and nurses) (table 3).
Intervention use by healthcare professional role
Discussion
This study aimed to investigate intervention use by parent carers of children with specific neurodevelopmental diagnoses and by different HPs in their roles within the feeding multidisciplinary team (MDT). The results provide information about current UK feeding services and their intervention use. The results have also been used to develop the FEEDS Toolkit, ensuring it is relevant to a wide range of HPs, and to parents of children with a range of diagnoses.
Responses show many interventions for children’s EDSD were used commonly across children with the different neurodevelopmental diagnoses. In contrast, some interventions were found to be more commonly used with children with specific conditions, for example, positioning in children with CP and DS, and strategies/programmes aimed at changing behaviour at mealtimes in autistic children. In comparison to previously reported findings regarding children with physical and mixed EDSD, and non-physical EDSD, a substantial difference in intervention use cannot be seen, for example, positioning reported as used by 61.8% of parent carers of children with physical and mixed EDSD, in comparison to 22.4% of parent carers of children with non-physical EDSD.6 This suggests that a child’s main neurodevelopmental diagnosis is not the main contributing factor determining intervention use, and the aetiology of the child’s EDSD, in addition to individual medical and social contexts, should inform intervention selection.
Our findings regarding intervention use by specific UK NHS HP role for children with EDSD may be related to professional availability to families and MDT working. The findings suggest that the Toolkit may be useful to MDT HPs, as while HPs most commonly recommend interventions related to their specialty, there was substantial evidence of HPs recommending interventions outside the scope of their traditionally perceived role. The versatility of the interventions included in the FEEDS Toolkit will support the future uptake in the NHS, despite regional variation in HP access and will provide a framework and opportunity for HPs to use the broad range of included interventions with parents. Some interventions were rarely recommended/used by any HP role. This could reflect HPs’ views on current evidence for intervention effectiveness or the lack of training/support to implement their use—the FEEDS Toolkit content may enable professionals to speak with MDT colleagues about interventions they are less familiar with and discuss a broader range of interventions with parents.
Limitations of this study include the small and unequal cohort sizes, both for main diagnoses groups and HP roles, precluding statistical comparisons. Additionally, the presence of comorbidities, coexisting diagnoses and their influence on feeding could not be considered, as only information about main neurodevelopmental diagnosis was collected. These limitations may have resulted in low reported use of some interventions (eg, no reported use of visual supports for children with CP). In the future, data collected through studies of FEEDS Toolkit use will be used to understand which interventions are used by parents of children with a range of diagnoses. Finally, despite using multiple methods to distribute the survey,5 respondents were mostly mothers, and most were white. Representation across the four nations was limited. Future data collected via the FEEDS Toolkit directly will allow for the collection of more representative data.
Findings from this study have contributed to the FEEDS Toolkit design by showing the range of interventions used in clinical practice. The lack of observable patterns relating to child main neurodevelopmental diagnosis further emphasises the importance of an individualised and child-centred approach to intervention use, rather than focussing on a child’s main diagnosis. Intervention use by specific HPs will inform how the FEEDS Toolkit might be implemented within already existing feeding services, and which HPs should be involved in using the FEEDS Toolkit and its further development and testing. Future data collected through evaluation of FEEDS Toolkit use may give information about the range of interventions used by parents of children and young people with specific conditions or a number of conditions.
Conclusion
HPs within feeding teams work in an interdisciplinary manner and there is often overlap across HP roles and intervention recommendation/use. A child’s main neurodevelopmental diagnosis does not substantially influence intervention use and should not be the main factor of consideration when deciding interventions to use—an individualised approach should be adopted. These findings can be used to plan clinical provision, and how UK and international health professionals work with young people and families. The findings influenced FEEDS Toolkit design and should improve this resource that supports parent carers and HPs to work collaboratively and make decisions about which interventions to use to improve feeding.
Data availability 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.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and this study was approved by The West Midlands and the Black Country Research Ethics Committee (17/WM/0439). Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We are grateful to all of the participants who gave their time to complete the survey. The sponsor for the study was Newcastle upon Tyne Hospitals NHS Foundation Trust. We are grateful to the following FEEDS coinvestigators for their work on the FEEDS study: Helen McConachie, Julian Thomas, Charlotte Buswell, Johanna Smith, Dawn Craig, Allan Colver and Elaine McColl.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
X @Pen_CRU
Contributors JP was chief investigator, co-led the design and delivery of the study and is the guarantor. LP co-led the design and delivery of the project. JP, MA and LP supervised data analysis. HT undertook data collection and data analysis. ES undertook data analysis. CM, JC, DS and DG contributed to the design of the survey. All authors contributed to the study design, interpretation of results, writing of the manuscript and reviewed and approved the final version.
Funding This work was supported by the National Institute for Health and Care Research Health Technology Assessment Programme (ref: 15/156/02). The National Institute for Health and Care Research Health Technology Assessment Programme report from the research (including that reported in this manuscript) can be found at: https://www.journalslibrary.nihr.ac.uk/hta/hta25220/%23/full-report.
Disclaimer The views expressed are those of the author(s) and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care.
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, travel and accommodation fees to attend a symposium at which she was giving an invited lecture from Nutricia Netherlands, and lecture fees from Nestlé SA (Vevey, Switzerland). JC reports personal fees from Novartis Pharmaceuticals (Basel, Switzerland) and Ispen Pharmaceuticals (Paris, France).
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.