Communicating with Young People About Genetic Cancer Risk
Most parents wonder about how and when they should talk to a young person about cancer genetic risk. There may be many reasons why it is appropriate to begin or continue conversations with a young person to help them understand more about genetic cancer risk.
Reasons include; they may be required to have a genetic test, be recommended to have procedures to screen, treat or reduce the risk of cancer and/or a young person may be witnessing you or other family members having procedures or surgery to manage cancer risk or treat cancer.
Common concerns of parents?
Parents can often be concerned about whether telling a young person about genetic risk during adolescence or young adulthood is the right time. Many parents often make statements such as;
“I am worried that my young person is experiencing so many changes and stressors in their life that this information may add further stress?”
“I am not sure my young person is able to cope with this information at this point in their life?”
“ I worry that my young person make different life choices because of their cancer risk”
Whilst is it natural for parents to express these concerns, it is important to consider how much your young person may already know or could inadvertently uncover. Young people often pick up on what is happening around them.
Young people often want to protect parents as much as parents want to protect young people. The risk of not discussing information openly with a young person is that the young person may not feel able to ask questions or coming to a parent with a health concern.
Trusting relationships are very important for parent’s and young people so it is important to consider this in any decision to communicate genetic risk information with a young person.
Benefits of talking to a young person
When a young person does not understand what is happening they can worry, feel alone and misunderstand the situation. They may worry about you or their own health and safety. Helping a young person to understand cancer genetic risk and what it means for them and your family will:
• help to know that it is okay to talk about it.
• allow them to ask questions and get the correct information.
• help them come to you (or others) when they are worried or if relevant have any worrying physical changes
• build a foundation of honesty and respect that can strengthen relationships.
This resource will help you to prepare for conversations with a young person about genetic cancer risk so you can help them to understand what it means. It steps you through:
- thinking about how you feel about your genetic cancer risk
- thinking about what a young person may notice and experience.
- preparing to talk with a young person.
Preparing to talk with a young person
Young people have a much more adult understanding of illness than children, such as illness can lead to death. Young people may wish to know what is happening for your health, how the genetic risk could affect their health and if the risk will change their life in ways that are different to their peers. Young people may or may not want to explain or feel able to explain these issues to others, including friends.
Thinking about how you feel about cancer genetic risk and how you feel about your young person’s situation is important in how a young person may understand and adjust to any information you share.
Asking yourself the following questions can assist in helping you understanding how you feel about genetic cancer risk and the idea of sharing information with a young person;
- What do you feel when you think about your cancer risks?
- What do you feel when you think about your young person being at risk of a genetic cancer risk?
- What does the other young person’s parent about cancer genetic risk?
- What do you feel when you think about having conversations with your young person about genetic cancer risk?
- What do you understand about how the genetic cancer risk may affect your young person?
TIP –Whilst it is normal to feel sad, anxious, guilty or worried it may be helpful to talk with a health professional and/or peers or friends to work through these emotions and feelings before talking to a young person.
Understanding what a young person notices and experiences is also important, the questions below may help you in thinking about this further or may be questions you wish to ask a young person;
- What may have they noticed or experienced that has changed since I learnt of the genetic cancer risk?
- what have you noticed about their reactions?
- what do you think they might be feeling?
- what might they understand or not understand?
- What do you think might worry about the most?
Practical tips in preparing for conversations
The main aspects to consider in preparing for a conversation are;
- The environment - when and where to begin conversation/s
- Content – what to say and what language to use
- Asking questions - how and when to ask questions
- Support and follow up - what other resources or supports are available to them.
When and where to start the conversation/s?
Timing and location is important, questions that may be helpful for you to identify a good time may be;
- is your young person having a particularly difficult time at school or with social groups? (would delaying a short time be possible?)
- what time of day is best able to focus and concentrate on what you are saying and for the young person to listen and process what you are saying?
- where do you have the best conversations, at the breakfast or dinner table, at bed time, in the car?
- who else will be around when you plan to share the information? (if you children at different ages you may need to consider if different approaches)
- Who else may be able to help support you in sharing information and/or keeping an eye on how your young person may respond e.g. other relatives, friends or school teachers.
What to say and how, it can be helpful to start small and be prepared to have multiple conversations. It can be helpful to understand what they may already know and what most concerns them.
Young people often to want to understand what it means for them at their life stage, e.g. am I different from my friends, do I need to do anything about this now, will it change my plans for study or ability to participate in extra circular activities sports etc? Some may have the same worries as adults such as will they are able to bear children or live a long life. Remember the information you need to share with them, may be different from what you received about how the information impacts your health at your life stage. If you need help in understanding this do it before you begin the conversation.
Take it slow. Stop and pause after each new bit of information. Sometimes the conversation may be very short – don’t worry if this happens, small conversations are just as important as big ones, they all add up and help people learn at their pace.
Focus on the positives. Communicate how the information about their genetic risk is of benefit to them and what is in their control can help allay fear caused by the uncertain nature of the information.
Give your young person time to think and to ask questions (the questions might not come straight away, they may need thinking time).
Know what to do if you don’t know the answer, e.g. tell them that you will find out, or even find out the information together and follow through.
Encourage your young person to ask questions or raise concerns whenever they want and make sure when they do, answer them or make time to answer them as soon as possible so they feel valued and trust that you aren’t avoiding the topic. Questions can arise when you least expect them to!
Support and Follow up
Young people access and receive information from a number of different places such as friends, television and online including social media. This information may not always match your experience, listen to your young person about what they understand and then explain. You may want to give them written information or direct them to reliable online resources.
Set up a support network so that your young person also can seek answers from a person that you both trust (e.g. a family member, a family friend, teacher or a health professional).