Screening for sickle cell and beta thalassaemia

Communicating results

People's first reaction when they get a positive carrier screening result is often a mixture of shock, anxiety and uncertainty. They may be confused about what being a carrier means and worried about the implications for their baby. (See also sections on 'Feelings about the results', 'Newborn screening - the effect on parents', 'Timing and delay' and 'Explaining genetics and risk'). 

Parents acknowledged that there is no easy way to break this news, but identified some things which could help. In particular people felt it was important to be able to speak to someone directly as soon as possible. Getting results in a letter was difficult for many people to deal with, especially if people had not really understood that they were being screened. Improving information at the consent stage will help, but it may still be difficult for people to absorb when they have just given birth and are focussed on the new baby.

Several people had been unsure what some of the terms meant in the letter they received, such as 'abnormal haemoglobins'. One mother said that because she has dyslexia she finds reading long words much more difficult than visual information or listening to someone.

Another mother was initially puzzled to be told she was a carrier of haemoglobin D Punjab. She needed to sit down face-to-face with a counsellor who could explain to her in Urdu. 'I said that I'm not a Punjabi, and she said “It's not related to Punjab…It's just that this haemoglobin has been given this name, so anyone can have it”.'

One mother felt the terms used to inform her of the results were too blunt. She had in fact received a phone call rather than a letter, but was so shocked she dropped the phone. Like the couple in Interview 26, she said she would have preferred to be told to come down to the surgery to be told about the results.

However, another mother realised something must be wrong as soon as the counsellor fixed an appointment to come and see her, so it is not clear whether people would find this approach any more reassuring. (In her case, though, she already knew her baby might be affected because she had discovered in pregnancy that she was a carrier).

A mother who was called for screening several times found it annoying that a home visit had been organised, to give her the results, but this had been done without asking her whether it was a convenient. She felt sometimes professionals had talked down to her and underestimated her ability to understand what it means to be a carrier.

Last reviewed September 2015.
last updated September 2015.

Feedback

Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site.

Make a Donation to healthtalk.org





Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email