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City academics awarded NIHR grant for study on tube feeding and disabled children

Work will help explore the best way to support families and their children

by George Wigmore (Senior Communications Officer)

Dr Gill Craig and colleagues at City University London have been awarded a grant by The National Institute for Health Research Health Services and Delivery Research (NIHR HS&DR) Programme to research care pathways and psychosocial support for families of children with neurodisability requiring tube feeding.

Recent evidence reviews have shown the need to provide structured support in care pathways for children and their families.

The two year research project will specifically investigate how the clinical and community services have responded to recommendations in evidence reviews to provide structured support in care pathways. The study aims to make recommendations for change and will deliver minimum standards of support which will improve the quality of care and health outcomes for children and their caregivers.

The research team will work in collaboration with academics, clinicians and advocacy organisations including: the London School of Hygiene and Tropical Medicine, Sussex Community NHS Trust, Kent Community Health Foundation NHS Trust, NHS Borders, Lewisham and Greenwich NHS Trust, Birmingham Children’s Hospital NHS Foundation Trust, Solent NHS Trust and with Triangle, an independent organisation that works to reposition children in society as competent communicators and active agents in their own lives.

Speaking about the grant, Dr Craig, a Senior Lecturer in Disabilities & Social Inclusion from the Centre for Maternal & Child Health at City University London, said:

“This work will help explore how we can best support families and their children. Little research has been done in this area and we need to understand how we can support caregivers to improve the quality of decision making about children’s feeding. This research will help by raising standards of psychosocial care and will improve the quality of life for children and their families”.

Anna Gill OBE, Lay chair of the project advisory group and mother of a disabled young person, said:

“Parents need a lot of support when considering the many implications of a gastrostomy feeding tube for their child and yet support can be patchy. This study will really help services to develop a more consistent approach to supporting children and families.”

The project team
Craig G1 [Chief Investigator] Harding C1, Flood C1, McCourt C1, Ayers S1, Sellers D2, Townsend J3, Dhandapani B4, Donaldson B5 , Moss D6, Protheroe S7, Tuffrey C8 , Cole M9, Gill A (Lay Chair)

Project Advisory Group
Cockerill H10, Cogher L11 Horridge K12 Aziz H (parent).

1City University London, 2Sussex Community NHS Trust, 3The London School of Hygiene and Tropical Medicine, 4Lewisham and Greenwich NHS Trust,5 Kent Community Health Foundation NHS Trust, 6NHS Borders, 7Birmingham Children’s Hospital NHS Foundation Trust,8Solent NHS Trust 9Triangle, 10 Evelina London Children’s Hospital, 11Sheffield Children’s NHS Foundation Trust, 12Chair North of England Collaborative Cerebral Palsy Survey

NOTES
1. The National Institute for Health Research Health Services and Delivery Research (NIHR HS&DR) Programme was established to fund a broad range of research. It builds on the strengths and contributions of two NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which merged in January 2012. The programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services, including costs and outcomes. The programme will enhance the strategic focus on research that matters to the NHS. The HS&DR Programme is funded by the NIHR with specific contributions from the CSO in Scotland, NISCHR in Wales and the HSC R&D Division, Public Health Agency in Northern Ireland. www.nets.nihr.ac.uk/programmes/hsdr

2. The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).

This article presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

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