For teenagers with beta thalassaemia major
Thalassamia is a group of blood disorders which affect the red blood cells. The most severe form of thalassaemia is beta thalassaemia major. Those with this form of thalassamia need blood transfusions for their whole life.
Often in genetic conditions such as thalassaemia, parents experience guilt for their child's illness. Some parents become overly protective and controlling. Families affected by thalassaemia can feel isolated and have little contact with other families.
In addition, healthcare professionals recognise the difficulties for young people of their transition from children to adult services. There is very inconsistent support for young people with thalassaemia in place across the UK.
Roald Dahl's Marvellous Children's Charity is working in partnership with the UK Thalassaemia Society. This will provide research, booklet and a workshop to improve transition support for young people.
The project will be in two main stages. The first stage will be research, with questionnaires and focus groups thoroughout the UK. The research will be conducted across all cultural backgrounds relevant to thalassamia. It will also include parents of adults with the condition who have been through this process of transition, for advice about how they managed. There will also be interviews with expert healthcare professionals.
The second stage will be to design a guidance booklet aimed at both parents and teenagers with thalassamia. A workshop will be also held with teenagers and parents to share and discuss the findings from this project, and launch the booklet.