Care pathways:children with neurodisability and feeding difficulties
Research type
Research Study
Full title
What components of care need to be in place for children with neurodisability and feeding difficulties and their families in order to ensure high quality, integrated clinical and social care: the views of an expert panel
IRAS ID
137705
Contact name
Gillian Craig
Contact email
Sponsor organisation
City University London
Research summary
To date there is no information about how different neurodisability services meet the clinical and social support needs of children with feeding difficulties and their caregivers before and after surgery and when transitioning into adult care. Nor is there any guidance on what services should be providing as a minimum standard. Nationally there is considerable variation in the way services are staffed and delivered but there is no real rationale for the diversity of provision. Moreover there is a lack of intelligence on the different service models and skill mix needed to provide high quality care and no national guidance on what elements of care should be included in care pathways. Variability in services can lead to inequality of provision. For example, there is evidence to suggest that dysphagia assessments may not form part of routine care. This matters because disabled children are often severely malnourished by the time they present for surgery for a gastrostomy feeding tube and professionals express concerns about the safety of oral feeding, the risk of oral pulmonary aspiration and respiratory disease. Research has highlighted variations in the use of gastrostomy across Europe and age of placement both between countries and within the UK. Variation was attributed to differential access to services, parental choice, differences in clinical practice and the general lack of guidelines (Dahlseng et al. 2012). This pilot study aims to convene an expert panel of 14 clinicians, allied health professionals and parents of children to develop care pathways and identify minimum care standards using two qualitative group discussions with members of the panel. The pilot study will produce guidance on care pathways and service delivery models and will help to develop a wider research study mapping provison and practice nationally.
REC name
London - Surrey Borders Research Ethics Committee
REC reference
13/LO/1464
Date of REC Opinion
1 Oct 2013
REC opinion
Further Information Favourable Opinion