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Researching the needs of seriously ill young people

Mother with sick teenage daughter

The Open University Sexuality Alliance with Hospice UK have received funding to explore the sex, relationships and intimacy needs in the lives of young people with a life-limiting or life-threatening conditions, as part of an initiative being launched today (15 November 2018) to support seriously ill young people.

The Talking about … sex and relationships: Young people speak out project has been awarded £40,000 by the Improving Transitions for Young People Fund, run by Together for Short Lives, a UK wide charity that, together with their members, speaks out for all children and young people who are expected to have short lives.

Led by Dr Sarah Earle, Senior Lecturer in the OU’s Faculty of Wellbeing, Education and Language Studies and founding member of The Open University Sexuality Alliance, the project will develop a range of Open Educational Resources (OERs) that will facilitate young people to have conversations about sex, intimacy and relationships with their family, carers or professional support staff.

The project will also equip health practitioners to provide better support to young people on this invisible topic through knowledge, resources and a better understanding of the views and experiences of young people themselves.

Advances in medical technology mean that the number of young people with life-limiting conditions is increasing. There are now almost 13,000 18-25-year-olds living with a life- limiting condition, and this number has grown by 33% over 10 years. Unfortunately, a lack of coordination between adult and children’s services means that young people can fall through the gaps and miss out on vital care. 

Dr Earle said: “Sometimes sex can be difficult to talk about, especially if you are a young person with a life-limiting or life-threatening condition. Over the next two years this project will support young people to talk about sex, relationships and intimacy, ensuring that their needs are met, and that they have every opportunity to live a rich and fulfilling life filled with friendship and fun.”

Read more: Improving Transitions for Young People Fund on the Together for Short Lives

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