Parents of children with congenital heart disease

Finding information about congenital heart disease

There are many types of congenital heart defect. Information on outcomes or quality of life are sometimes uncertain and the medical terminology used is complex. It can be difficult for parents to make sense of information they are given when their child is diagnosed with a congenital heart defect. Here parents we interviewed talk about their information needs, where they found information and its usefulness.

Many parents found it hard to digest a lot of information at the time of diagnosis but later they wanted the opportunity to ask questions and get information. One mother who had the opportunity to do this said it had been helpful. A few who were medically trained said that having this knowledge at diagnosis had helped.

Some treatments in paediatric cardiac care are relatively new and information about survival or outcomes is minimal or not clear cut. Parents whose child had a particularly rare condition had found it frustrating that they could not get definite answers to their questions.

Some people used the internet to search for information, others relied on information from the hospital. One couple explain how they managed their different needs for information. Some parents wanted to have as much information as possible; others wanted information in stages. A few wanted only basic information about their child's diagnosis; one couple explain that they chose to spend time with their child rather than 'pouring over books' for extra information.

Many parents said that they were given plenty of useful information by the cardiac care team (see Interview 22). Several had been given detailed explanations, lots of time to ask questions, and information had been repeated if they didn't understand. Some cardiac surgeons had used a plastic heart to explain the workings of the heart to parents; others had drawn diagrams. One couple felt they couldn't ask the doctors all the questions they needed answers to because they were so busy. Most parents were concerned to find out what day-to-day life was going to be like for their child.

Parents said they found the booklets they received from the hospital helpful. One couple had found the information on medication useful to refer to when they were caring for their baby at home. Another mother had been shown a video on pacemakers, which she had found very helpful.

Booklets and newsletters provided by national support organisations had also helped (see 'Resources and Information' section). Many said that the book produced by HeartLine had been very comprehensive and extremely useful. Another couple recommended getting the booklet from the British Heart Foundation, which they said had helped them to understand their son's heart condition.

Some parents found it hard to get information. One couple recalled that it was difficult finding information about their daughter's complex heart condition because she had a number of heart defects. Parents of children with rarer heart defects had also found it hard to get information on their child's condition.

Several parents had used the internet. The British Heart Foundation website has a list of terminology used, which helped one father (see Interview 22). One mother, who was also a doctor, had found pictures and information to explain their daughter's condition to her family and friends. Another couple pointed out that although some of the American websites discussed different treatments, they had found extra information on them useful. Some had found that the information on the internet was too technical, presented the worst case scenario, or was too distressing. 

Most parents who had read books from the library said they had found the information too clinical, and the terminology complicated and unhelpful. A few had gained useful information from newspaper articles or television programmes. One mother explains that by reading about valve replacements in a newspaper article she had discovered the Children's Heart Federation, which had been a good source of information.

A few parents had sought a second opinion on the best hospital for their child or on their child's diagnosis. One father explains why he decided against getting a second opinion.

Many parents emphasised that one of the most helpful sources of information had been other parents (see Interview 10). Talking to other parents had given them a non-clinical perspective about daily life with a child with a heart condition and they could ask questions that they might not want to ask a specialist.

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Last reviewed July 2018.

Last updated April 2010.


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