Title: How do different neurodisability services meet the psychosocial support needs of children/young people with feeding disabilities and their families: a national survey and case study approach to mapping and costing service models, care pathways and the child and family experience
Funder: Department of Health and Social Care

Abstract: Background: Children with neurological impairment (eg. severe cerebral palsy) experience poor nutrition and growth due, in part, to difficulties chewing and swallowing. [1] Mothers spend lengthy periods trying to feed children (more than 3 hours a day) which can be stressful. Maternal depression is not uncommon. [2] A gastrostomy feeding tube (surgically placed in the stomach) is usually recommended. This can generate parental opposition resulting in conflicts between families and professionals around the child’s feeding management particularly where oral feeding, which parents view as important, is considered unsafe and the child is severely malnourished. Evidence reviews recommend providing care pathways with structured support for children and families to improve informed decision making on the need for a gastrostomy feeding tube. Aims: This research aims to map how neurodisability services have responded to these recommendations: to a) identify different support models nationally b) compare the implementation and operation of contrasting models of support and key resource differences c) provide an estimate of their costs, sources of funding and cost variations. Methods: We will adopt a three-staged, mixed methods design involving: 1. An online national survey of policy and practice, support models, staff deployment and costings distributed through a national database of 240 child development teams; 2. A multi-site ‘collective case study’ [5] of four service models selected purposively based on criteria developed in a familiarisation study resulting in a 2 x 2 matrix of integration (high/low) and support (high/low) in a range of contrasting contexts. Criteria will be revised based on the results of our survey. We plan to conduct interviews (n=20) and group discussions (n=2) per case with a theoretical sample of managers, commissioners, staff, children, parents, teachers and others involved in children’s care to analyse their experiences of feeding and support and, observations (20 hours) to examine how support, guidelines and protocols are implemented in practice, allowing triangulation of data; 3. A study of cost of support and associated resource use within different services will provide economic descriptive data using Personal Social Services Research Unit data [6] and Willingness to Pay Methodology with service managers and carers. Analysis: Numerical data (frequencies and summary statistics) from the national survey and costs will be analysed using SPSS. Qualitative interview data will be analysed using framework analysis [7] informed by: Mahant et al.'s. model of decisional conflict and support [4] and Greenhalgh et al.'s organisational theory of factors influencing diffusion of innovation and barriers to implementation.[8] Outcomes: This research will produce guidance on models of support to inform commissioners of future services and make recommendations for change on how to embed support within the care pathway. We will identify the training and support needs of professionals and develop minimum standards of support. Benefits to NHS: Estimating the key characteristics and costs of providing different models of psychosocial care will ensure a minimum standard of support for all families, equity across services and efficient use of staff time and resources. This, in turn, will help improve the quality of informed decision making so children and families experience good care, improved quality of life, health and psychological outcomes

Lay abstract: 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.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: NEUROLOGICAL