Gastrostomy feeding and psychosocial support (G-PATH SUPPORT)

What is G-PATH SUPPORT

Gastrostomy feeding and psychosocial support is short for the long 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 are inviting 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 are 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.

What are the aims of the research?

We aim to:

• identify different models of support through a national survey of professionals who provide care for children and their families.
• compare how four different services support and estimate how much it costs to do this so that we can make recommendations to those in the commission services.

What would we like to see at the end of our research?

At the end of our study we want to be able to:

• describe how support is offered in four different services and parents experiences of support 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.

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 31-12-18 (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 (g.craig2@herts.ac.uk).

Progress to date

We have conducted a questionnaire survey with professionals asking about how they support children and families. We have conducted two case studies identifying examples of support. We are currently conducting two case studies. If you would like more information, please contact us at gpathsupportstudy@herts.ac.uk.

Staff

Chief Investigator

• Dr Gill Craig Reader in Public Health & Social Science, University of Hertfordshire (g.craig2@herts.ac.uk)

Research Fellows

• Dr Eva Brown Hajdukova, University of Hertfordshire (e.hajdukova@herts.ac.uk)
• Dr Cynthia Ochieng, University of Hertfordshire (c.ochieng@herts.ac.uk)

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*
• 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

*Co-Investigators