Parents of children with congenital heart disease

Talking to health professionals

There is no easy way to tell a parent that their unborn baby or child has a congenital heart defect. But how parents are told can have a powerful impact on their state of mind, coping ability and future relationship with their child's medical team.

Communicating well with parents about their child's illness is a special skill. As one of the mothers interviewed said, 'Worried parents aren't rational, they're not thinking straight. They're not understanding what's being said to them. They need things repeating. They're probably not even listening'.

Parents we interviewed spoke very highly of the doctors who cared for and treated their child. Many felt they had excellent relationships with their child's cardiac care team. Many doctors had taken time to explain their child's diagnosis and treatment options to parents in a way that they could understand. They had repeated information, drawn diagrams and even used a model of a heart. 

One mother comments that the communication with the cardiac care team had been excellent, that they had provided emotional support and built a close relationship with their family. Another couple appreciated the open and honest approach of their son's consultant and said he was always accessible.

Parents we talked to stressed that when a child is first diagnosed, they need information about their child's illness to be communicated in simple language. Many had found the terms and abbreviations used very difficult to understand. One couple describe the difficulties they had understanding the terminology and not feeling able to ask for explanations. 

One father admits that it can be difficult for doctors to find the right approach. He appreciated the direct and straightforward way in which their son's consultant had told them that he needed open heart surgery, whereas his wife would have preferred a more sensitive approach.

Good communication during times of stress can make a difference to parents. One couple describes the extra effort their child's surgeon made in communicating with them when she was having her operation. A father explains that poor communication between the nurses on the ward about his son's medication and feeding requirements had made a difficult situation more stressful than it needed to be.

In some cases, communication between parent and doctor could have been better. One mother explains that the way her child's doctor communicated her son' diagnosis was not helpful and suggests a way that would have been better.

The way the cardiac care team had communicated with children was also important. One mother recalled the way doctors talked to her son and how they always had time for him. She remembers that once, her son's consultant had stopped his car when he was leaving the hospital car park to chat to her son which had made him feel very special.

After appointments, parents may have questions or concerns that they need answered but may not feel able to contact the consultant to ask questions. One mother explains that she sent her consultant an email detailing her questions and concerns and he telephoned her at home the following afternoon, and that made her feel very reassured.

Mothers may have frequent contact with their health visitor during their child's early months of life. Several mothers stressed how important it was for health visitors not to make mothers feel a failure if they were having problems feeding their baby. ( See ‘Sources of support’  for more experiences with health visitors, nurses and doctors.)

Last reviewed December 2014.

Last updated December 2011.

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