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.

Professional learning: Getting results by telephone rather than a letter would still have been a shock but at least then you can ask questions straight away.

Professional learning: They received newborn screening results in a letter with a leaflet in which 'sickle cell' was highlighted. They would have preferred a phone call or a doctor's appointment.

Professional learning: When they opened the letter telling her she was a carrier it was too late in the evening to call anyone. People need reliable, evidence-based information.

Professional learning: They really needed to talk to someone directly about their results, and they needed help from interpreters.

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.

Professional learning: Being dyslexic, she finds reading long medical terms hard. She would have found it easier and less frightening to talk to someone about her results.

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.

Professional learning: Rather than getting results in a letter or a phone call, she would have been less worried to be told to come for an appointment.

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).

Professional learning: She knew something must be wrong because the counsellor fixed an appointment to visit her at home. (Read by an actor.)

A mother who was called for screening several times found it annoying that a home visit to give her her results was fixed without consulting her if it was convenient. She felt sometimes professionals had talked down to her and underestimated her ability to understand what it means to be a carrier.

Professional learning: She got a letter on the Saturday telling her the counsellor was coming on the Monday. She couldn't contact the counsellor to tell her she'd be out at work. (Read by an actor.)

Professional learning: When her second baby was born, she felt the consultant paediatrician talked to her as if she didn't know anything about being a beta thalassaemia carrier. (Read by an actor.)

Tailored professional resources for different groups of NHS staff have been developed by the PEGASUS network (Professional Education for Genetic Assessment and Screening). Training materials and details of local courses are accessible online.

Last reviewed August 2010.