Welcome to Gastrostomy Feeding and Psychosocial Support
What is G-PATH SUPPORT?
Gastrostomy feeding and psychosocial support is the short title of the project ‘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.'
We invited children with neurodisability and complex feeding needs, their parents, and professionals who care for them, to participate in our research study to find out about their experiences of giving and receiving support. We were doing the research so that we can identify the best way of providing support to children and families and develop guidance for professionals and services.
♦ identify different models of support through a national survey of professionals who provide care for children and their families,
♦ compare how four different services offer support and estimate how much it costs to do this so that we can make recommendations to those who commission services.
The project has now finished and the project report and video disseminating the findings, will be made available later in the year. For further information, contact Dr Gill Craig firstname.lastname@example.org
General Data Protection | Regulation (GDPR) Compliance
Health and social care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.
If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful, you can complain to the Information Commissioner’s Office (ICO).
Our Data Protection Officer is Abigail Tomlinson and you can contact her at email@example.com
What are the key deliverables of the research?
At the end of our study we want to be able to:
♦ describe how support is offered in four different services as well as parents’ experiences of support so other services can see how this is done,
♦ set standards of support and guidance for children and families so that all services know the best way of providing support and families know how to access it,
♦ make recommendations for change so that commissioners and managers ensure support is available for those children and families who want it.
G-PATH Project Team
Dr Gill Craig firstname.lastname@example.org
Dr Eva Brown Hajdukova
Project Advisory Group (PAG)
Anna Gill OBE (Lay Chair of PAG)
Dr Celia Harding - City, University of London*
Dr Chris Flood - City, University of London*
Professor Christine McCourt - City, University of London*
Dr Diane Sellers, Sussex Community NHS Foundation Trust*
Professor Joy Townsend, The London School of Hygiene and Tropical Medicine*
Dr Brindha Dhandapani, Lewisham and Greenwich NHS Trust*
Bryony Donaldson, Kent Community Health Foundation NHS Trust*
Dawn Moss, NHS Borders*
Dr Susan Protheroe, Birmingham Children’s Hospital NHS Foundation Trust*
Dr Catherine Tuffrey, Solent NHS Trust
Maxime Cole, Triangle*
Jane Shaw, Sheffield Children’s NHS Foundation Trust
Habbib Aziz, Parent Representative, Co-ordinator of Cerebral Palsy Network Newham, East London
Helen Cockerill, The Evelina London’s Children’s Hospital (until 2017)
Dr Karen Horridge, City Hospitals Sunderland NHS Foundation Trust
Professor Mark Whiting, University of Hertfordshire
Dr Eilis Kennedy, The Tavistock and Portman NHS Foundation Trust
Our Patient and Public Involvement (PPI) will be conducted by Triangle.
Triangle is an organisation that aims to: “reposition children and young people in society as competent communicators and active agents in their own lives."
Triangle will organise a parent and young people's group. There will be 12 group meetings across the life of the project (6 parent and 6 young people meetings).
The PPI group will:
Input into research instruments and project information sheets
Assist with interpreting findings
Assist with dissemination activities
The researcher will sit in on user involvement sessions.
In addition, we have a parent of a disabled young person on our Project Advisory Group.
The study is funded by a National Institute for Health Research, Health Services and Delivery Research (HS&DR) Programme [14/04/40]. Our study has been reviewed by an ethics committee to ensure that our research is conducted in an ethical manner. [IRAS ID 178366]. The study is registered on the research portfolio [CPMS ID: 31085]
Start date 01/01/16 - End date 31-05-19 (this reflects a 10 month pause in the study while the project moved to the University of Hertfordshire).
The Chief Investigator is Dr Gillian Craig Drgillcraig@gmail.com