G-PATH SUPPORT:Gastrostomy feeding and psychosocial support
Research type
Research Study
Full 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.
IRAS ID
178366
Contact name
Gillian Craig
Contact email
Sponsor organisation
City University London
Clinicaltrials.gov Identifier
178366, IRAS
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Children with neurological impairments (such as severe cerebral palsy) experience poor nutrition and growth due to difficulties chewing and swallowing (dysphagia). This can affect their ability to gain adequate nutritional intake by mouth (Reilly et al 1996). Mothers spend lengthy periods trying to feed a child (more than 3 hours a day) which can be stressful. Maternal depression is therefore common (Sullivan, 2004). A gastrostomy feeding tube (a tube surgically inserted in the stomach to ensure the child receives adequate nutrition) is sometimes recommended. However the suggestion of a gastrostomy can generate parental opposition. This can result in conflicts between families and professionals around the child’s feeding management particularly when oral feeding, (which parents view as important), is considered unsafe and the child is severely malnourished. Evidence reviews recommend structured support in care pathways to improve informed decision making about children’s feeding and the need for a gastrostomy tube (Ferluga, 2013; Mahant, 2011).
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, and c) provide an estimate of their costs, sources of funding and cost variations.
Methods
Over a two year period, we will conduct:
1. An online national survey of child development teams (240) scoping models of psychosocial support, policy and practice,
2. A multi-site qualitative ethnographic case study of four service models involving 20 interviews, 2 focus groups and 20 hours of observation per site with a theoretical sample of managers, staff, children, parents, teachers and others involved in children’s care to analyse their experiences and identify best practice,
3. A study of the cost, associated resource use and preference for the four service models by means of questionnaires to managers, commissioners, parents and clinical data.REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
16/LO/0214
Date of REC Opinion
4 May 2016
REC opinion
Further Information Favourable Opinion