What is the DeSIRe?
The decision support intervention for relatives (DeSIRe) is a paper based intervention and is available in Urdu and in English. It was developed for use by healthcare professionals with relatives of people with βeta-thalassaemia major. The DeSIRe was designed to support relatives to make informed decisions about thalassaemia carrier testing. The DeSIRe contains accurate and balanced information written in a way to help people understand more about:
- the βeta-thalassaemia condition;
- recessive inheritance;
- what it means to be a thalassaemia carrier;
- why relatives may opt for or against thalassaemia carrier testing; and
- reasons for considering thalassaemia carrier testing when marrying in or out of the family.
The DeSIRe has questions to help relatives think about whether to opt for or against thalassaemia carrier testing.
Why should the DeSIRe be used?
People who have used the DeSIRe believed it is useful for making decisions about thalassaemia carrier testing. Also, the DeSIRe has been evaluated by relatives of children with βeta-thalassaemia and by field officers as acceptable and culturally appropriate for use in Pakistan.
Who should use the DeSIRe?
Healthcare professionals who provide genetic counselling to parents and/or relatives of children with βeta-thalassaemia major. Parents of children with βeta-thalassaemia major can also use the desire to help their relatives consider thalassaemia carrier testing.
When should the DeSIRe be used?
The DeSIRe can be used at any time. We advise using it during genetic counselling of relatives after the diagnosis of a child with βeta-thalassaemia major or a thalassaemia carrier in a family. Parents may want to use it with their relatives to help them explain the βeta-thalassaemia major condition and reasons for thalassaemia carrier testing.
How should the DeSIRe be used?
The DeSIRe has been designed for use by healthcare professionals to support genetic counselling. Healthcare professionals can use it by providing copies to the DeSIRe to relatives and then reading it aloud and explaining any information in more detail, where necessary.
DeSIRe leaflet (English)
DeSIRe leaflet (Urdu)