Research & Resources
Resources for professionals who work with seriously ill children and their families.
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8 Principles for Transition: Guidance
Guidance and tools from WellChild, WellChild Nurses across the UK and All-Age Continuing Care, to support health and care professionals to improve practice for children and young people with complex medical needs requiring transition from children to adult services.
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Growing Up Using A Ventilator
A booklet written for young people and young adults that use a ventilator to support their breathing.
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10 Principles for Complex Discharge: Guidance & Toolkit
Guidance and toolkit from WellChild and the Pan Thames LTV Collaborative to support health and care professionals to improve practice for all children and young people requiring a complex discharge from hospital to home and beyond.
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11 Principles for Better Training
Guidance for health and care professionals on the development and delivery of training for unpaid carers.
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Competency documents for parent and carer LTV training
A training resource by the Paediatric Pan London Long Term Ventilation Group for those caring for a child or young person with Long Term Ventilation.
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Development of a framework for the effective management of children’s pain
Simons J. Carter B. Craske J. (2020)
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Communicating Lily’s Pain
Resources that explore communication challenges that can occur around a child with profound cognitive impairment who experience pain.
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An exploratory study of children with long-term ventilation care packages and their family narratives using a salutogenic-based approach
Doctoral thesis by David Widdas
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#notanurse_but
Powerful parent video diaries on all aspects of life caring for a child with complex health needs at home.
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Research highlights issues for parents caring for children with complex care needs 24/7
Caring for children ‘24-7’ - The experience of WellChild Nurses and the families for whom they are providing care and support, by Mark Whiting
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NHS North West Children’s ODN Hub Paediatric Critical Care, Surgery in Children, Long Term Ventilation
NHS North West Children’s ODN Hub consists of Paediatric Critical Care, Surgery in Children, Long Term Ventilation Operational Delivery Networks. It’s aim is to provide impartial clinical advice and expertise to all providers and commissioners across the North West of England (Cheshire and Mersey, Greater Manchester, Lancashire and South Cumbria), North Wales and the Isle of Man
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