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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