Interventions to improve continence for children and young people with neurodisability: a national survey of practitioner and family perspectives and experiences
dc.contributor.author | Eke, H | |
dc.contributor.author | Ball, S | |
dc.contributor.author | Allinson, A | |
dc.contributor.author | Anderson, R | |
dc.contributor.author | Hunt, H | |
dc.contributor.author | Hutton, E | |
dc.contributor.author | Lindsay, C | |
dc.contributor.author | Logan, S | |
dc.contributor.author | Madden, N | |
dc.contributor.author | Melluish, J | |
dc.contributor.author | Richardson, D | |
dc.contributor.author | Rogers, J | |
dc.contributor.author | Thompson Coon, J | |
dc.contributor.author | Whear, R | |
dc.contributor.author | Wright, A | |
dc.contributor.author | Morris, C | |
dc.date.accessioned | 2023-11-24T15:16:00Z | |
dc.date.issued | 2024-01-19 | |
dc.date.updated | 2023-11-24T13:59:59Z | |
dc.description.abstract | Objective: Describe families’ experiences of interventions to improve continence in children and young people with neurodisability, and health professionals’ and school and social care staff’s perspectives regarding factors affecting intervention use. Design: Four online surveys were developed and advertised to parent carers, young people with neurodisability, health professionals and school and social care staff, via societies, charities, professional contacts, schools, local authorities, and national parent carer and family forums, who shared invitations with their networks. Survey questions explored: difficulties helping children and young people use interventions; acceptability of interventions and waiting times; ease of use and availability of interventions, and facilitators and barriers to improving continence. Results: 1028 parent carers, 26 young people, 352 health professionals and 202 school and social care staff registered to participate. Completed surveys were received from 579 (56.3%) parent carers, 20 (77%) young people, 193 (54.8%) health professionals, and 119 (58.9%) school and social care staff. Common parent carer-reported difficulties in using interventions to help their children and young people to learn to use the toilet included their child’s lack of understanding about what was required (reported by 337/556 (60.6%) parent carers who completed question) and their child’s lack of willingness (343/556, 61.7%). Almost all (142/156, 91%) health professionals reported lack of funding and resources as barriers to provision of continence services. Many young people (14/19, 74%) were unhappy using toilet facilities whilst out and about. Conclusions: Perceptions that children lack understanding and willingness, and inadequate facilities, impact the implementation of toileting interventions for children and young people with neurodisability. Greater understanding is needed for children to learn developmentally appropriate toileting skills. Further research is recommended around availability and acceptability of interventions to ensure quality of life is unaffected. | en_GB |
dc.description.sponsorship | National Institute for Health and Care Research (NIHR) | en_GB |
dc.identifier.citation | Vol. 8, article e002238 | en_GB |
dc.identifier.doi | 10.1136/bmjpo-2023-002238 | |
dc.identifier.grantnumber | 17/20/02 | en_GB |
dc.identifier.uri | http://hdl.handle.net/10871/134639 | |
dc.identifier | ORCID: 0000-0003-4781-6683 (Eke, Helen) | |
dc.language.iso | en | en_GB |
dc.publisher | BMJ Publishing Group | en_GB |
dc.relation.url | http://hdl.handle.net/10871/127283 | en_GB |
dc.rights | © Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ. 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/ | en_GB |
dc.title | Interventions to improve continence for children and young people with neurodisability: a national survey of practitioner and family perspectives and experiences | en_GB |
dc.type | Article | en_GB |
dc.date.available | 2023-11-24T15:16:00Z | |
dc.description | This is the final version. Available on open access from BMJ Publishing Group via the DOI in this record | en_GB |
dc.description | Data sharing: Data are available upon reasonable request. The full report of all survey findings is available from Open Research Exeter (ORE), https://ore.exeter.ac.uk/repository/handle/10871/127283 | en_GB |
dc.identifier.eissn | 2399-9772 | |
dc.identifier.journal | BMJ Paeditatrics Open | en_GB |
dc.rights.uri | https://creativecommons.org/licenses/by/4.0/ | en_GB |
dcterms.dateAccepted | 2023-11-23 | |
dcterms.dateSubmitted | 2023-08-18 | |
rioxxterms.version | VoR | en_GB |
rioxxterms.licenseref.startdate | 2023-11-23 | |
rioxxterms.type | Journal Article/Review | en_GB |
refterms.dateFCD | 2023-11-24T14:00:02Z | |
refterms.versionFCD | AM | |
refterms.dateFOA | 2024-02-01T15:26:01Z | |
refterms.panel | A | en_GB |
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Except where otherwise noted, this item's licence is described as © Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.
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/