Methods to enable children and young people with medical conditions to share information in order to help each other cope with their experiences
The use of the internet to provide health information to young people is a relatively recent development and there is great optimism that it will improve knowledge and promote healthy behaviours. However, health information on websites aimed at young people is most often written by adults, who make assumptions about what young people want to know and how best to display the information. Little research has been done to understand the needs and wants of children and young people looking for health information on the internet.
This workshop will present an overview of research methods that can be used to better understand the internet health information needs of healthy and ill children and young people. Participatory methods that enable children and young people to engage as partners in the process of developing and testing health information will be highlighted. Examples will be drawn from the Children First for Health and OpenSpace projects.
The Children First for Health (CFfH) website, www.childrenfirst.nhs.uk, provides accurate, comprehensive, accessible and age-appropriate, NHS-branded health information on topics spanning everyday health concerns to chronic illness, for children, young people and their families around the world. Throughout the development of the website we have involved children and young people through web-based feedback and user group sessions at the Children’s Hospital School based at Great Ormond Street Hospital NHS Trust.
OpenSpace, www.openspace.nhs.uk, is an online community for children and young people with chronic conditions. It was developed with the aim of improving children and young people’s social support systems by introducing them to others who share the same experiences in a safe environment, thereby reducing the isolation that is often experienced by these children and teenagers.
The workshop will cover many research methods that have been utilised in each of these projects, including methods that worked; methods that were not so successful and ways in which these methods have been adapted in following research in order to improve the quality of information gained. There will be substantial opportunity for discussion amongst the workshop speakers and participants on the issues brought forth in the presentation, such as: when to use individual vs group methods; how to recruit young participants; keeping things interesting; meeting the needs of diverse groups; helping children to tell their stories; helping children to help each other.