A study looking at family communication about breast cancer that runs in the family

The research team found out more about how parents talk to their children about inheriting a BRCA gene change (mutation).

This study was open for people to join between 2011 and 2012, and the research team reported the results in 2016.

About this study
The research team recruited 27 people from 11 families to take part in this study including:

• 14 parents
• 13 children and young people between 10 and 21 years old

One parent in each family had a BRCA gene mutation, which increased their risk of developing cancer. There is a chance that they could have passed this BRCA mutation on to their children, who would then also have an increased risk of developing cancer. 

Some of the parents had decided to have surgery to reduce their risk of cancer, such as a mastectomy to reduce their risk of breast cancer. 

They could have also chosen to have other treatments (such as hormone therapy) to reduce their risk of developing cancer. Or to have regular screening tests to detect any cancer early.

Results
The research team found there were 4 main findings from the interviews with the parents and children they interviewed.

Talking to children of different ages
It was usually mothers that spoke to their children about the increased risk of developing cancer, often in the child’s bedroom and sometimes with siblings.

The focus of the conversation varied depending in the age of the child or children.

For those aged under 11, the focus was on events that the child knew were happening, such as their mother going into hospital for surgery. The parents often used simple language.

For those aged 12 to 14, they talked a bit more about the possibility that the child may inherit the faulty gene. But focussed on the parent’s risk rather than the child’s risk.

For those aged 15 to 17, they talked more about the child’s possible increased risk. They also discussed ways they may be able to reduce their risk.

For those aged 18 or over, they talked about the child having a genetic test to see if they had inherited the change in the BRCA gene or not. The young adults also talked about the possible effect on their own children in the future. 

Talking about risk
The research team found that parents sometimes talked about their own risk, but didn’t really discuss the possible risk for their children. They tended to give more information to daughters than they did to sons.

Mothers often focussed on the benefits of surgery and reducing the risk of breast cancer. But tended not to talk about the possible psychological effects and body image issues of having surgery to remove their breasts (a mastectomy). 

This was usually because they wanted to protect their children from the negative aspects of having a BRCA gene mutation. But the researchers felt that putting on a ‘brave face’ can make children less likely to ask questions.

Understanding risk
Some parents didn’t give their children much information. They wanted to protect them from the negative aspects of having a BRCA gene mutation. But this meant the children were less able to understand how having a BRCA gene mutation may affect their risk of developing cancer. And how this might impact them.

Some children thought having a mastectomy to help prevent breast cancer and then breast reconstruction, was the same as having cosmetic breast surgery. And some even thought of it as way to get free cosmetic surgery that would otherwise be expensive.

Making decisions
Not giving children enough information about their risk of cancer and the possible negative impact of surgery did affect their decision making.

Some older children (15 years or older) understood more about it. They were more aware of the implications of being tested to see if they had a BRCA mutation. And what this could mean for future relationships and having children of their own.

Parents tended to focus on discussing surgery to reduce risk. They didn’t really talk much about other options such as medications or screening.

Conclusion
The research team concluded that there was a difference between what parents understood and what they told their children. They feel that children should have more balanced information.

They recommend that parents have more information and guidance from specialist nurses to help them talk to their children. Members of the research team have worked with several organisations to help them support parents in this situation.

Where this information comes from    
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed ) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.