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The Information Matters Project

Health, medicines and self-care choices made by children, young people and their families: Information to support decision making

Grant Holders: Professor Anne Williams (Nursing, Cardiff), Professor Jane Noyes (Nursing, Bangor) - in Cardiff School of Journalism, Media and Cultural Studies (JOMEC): Tammy Boyce, Cindy Carter,Terry Threadgold

Researcher: Odyseaus Constantinou in (JOMEC, Cardiff), 2 Research Assistants in Nursing, Cardiff

Funder: NHS Service Delivery and Organisation Research & Development Programme

Period: February 07 to February 2010

This project undertakes a study to provide a full picture of the information needs and preferences of children and young people, under 18 years with specific healthcare needs and conditions, and their families.

Using a three-phase research design that includes a range of children/ young people under 18 years with common long-term conditions including asthma, diabetes, and disabled children with complex needs, and acute conditions including unplanned orthopaedic surgery/ interventions and planned ear, nose and throat surgery, this project will review literature and currently available information sources for children under 18 years and their families; conduct interviews with children, young people, family members and health professionals, and observe where information is exchanged and used in routine clinical practice, and combine information from phases 1 & 2 to make recommendations concerning children/young people and family members’ information needs and preferences.