Authors' objectives: Many children with neurological impairment are unable to obtain an adequate nutritional intake by mouth due to difficulties chewing and swallowing which impacts on their growth and development. Mealtimes are long and stressful (in excess of three hours a day) and maternal depression is common. A gastrostomy feeding tube (GFT) is recommended (surgically placed in the stomach) and prescription feeds to meet the child s nutritional needs. However a GFT can generate parental opposition in coming to terms with an unnatural way of feeding. This creates conflicts in decision making between professionals, particularly where a child is severely malnourished, and parents who refuse the procedure. Evidence reviews recommend care pathways with structured support and approaches for ameliorating stress but this aspect is often overlooked by services. Parents wish to feed children orally, which they view as important, but support for this is inconsistent. Whereas some parents access support from designated professionals others may receive no support, or support from professionals with little training creating a disproportionate burden of time and resources, inequity of service provision and potential differences in child and family outcomes. We aim to: 1. Map national policy and practice through an on-line-survey to identify models of support using a national data base, 2. Conduct a multi-site, collective case study of four services selected purposively to learn about the different ways they have embedded support in a range of contexts. We have developed selection criteria based on our familiarisation study and, following the outcome of the national survey, we will refine these further. We will conduct observations of care planning meetings and interview staff, managers, commissioners, young people (YP) and their families (20 per case and 2 group discussions) about their experiences and analyse service protocols to understand how support is delivered and any barriers, 3. Examine the costs of the different models of providing support. We will make recommendations for standards of support and how to embed support within the care pathway to improve the quality of informed decision making and experiences of care.

Project Status: Completed

URL for project: http://www.nets.nihr.ac.uk/projects/hsdr/140440

Year Published: 2020

URL for published report: http://www.nets.nihr.ac.uk/projects/hsdr/140440

English language abstract: An English language summary is available

Publication Type: Not Assigned

Country: England, United Kingdom

Organisation Name: NIHR Health Services and Delivery Research programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk

Copyright: Queen's Printer and Controller of HMSO