Interventions to improve continence for children and young people with neurodisability: a national survey of practitioner and family perspectives and experiences.

Journal article


Eke, H., Ball, S., Allinson, Annette, Anderson, Rob, Hunt, Harriet, Hutton, Eve, Lindsay, Claire, Logan, Stuart, Madden, Nicholas, Melluish, Julia, Richardson, Davina, Rogers, June, Thompson Coon, Jo, Whear, Rebecca, Wright, Anne and Morris, C. 2024. Interventions to improve continence for children and young people with neurodisability: a national survey of practitioner and family perspectives and experiences. BMJ Paediatrics Open. 8 (1), p. e002238. https://doi.org/10.1136/bmjpo-2023-002238
AuthorsEke, H., Ball, S., Allinson, Annette, Anderson, Rob, Hunt, Harriet, Hutton, Eve, Lindsay, Claire, Logan, Stuart, Madden, Nicholas, Melluish, Julia, Richardson, Davina, Rogers, June, Thompson Coon, Jo, Whear, Rebecca, Wright, Anne and Morris, C.
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 of 556 (60.6%) parent carers who completed question) and their child’s lack of willingness (343 of 556, 61.7%). Almost all (142 of 156, 91%) health professionals reported lack of funding and resources as barriers to provision of continence services. Many young people (14 of 19, 74%) were unhappy using toilet facilities while 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.

KeywordsEnuresis; Health services research; Neurodisability; Humans; Parents; Quality of Life; Social Support; Adolescent; Child; Caregivers; Health personnel
Year2024
JournalBMJ Paediatrics Open
Journal citation8 (1), p. e002238
PublisherBMJ Publishing Group
ISSN2399-9772
Digital Object Identifier (DOI)https://doi.org/10.1136/bmjpo-2023-002238
Official URLhttps://bmjpaedsopen.bmj.com/content/8/1/e002238
FunderHealth Technology Assessment Programme
Publication dates
Online19 Jan 2024
Print01 Jan 2024
Publication process dates
Accepted23 Nov 2023
Deposited29 Jan 2024
Publisher's version
License
File Access Level
Open
Output statusPublished
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