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The system often forgets children of people with cancer: here’s how to help them

Every year around 21,000 teenagers and young adults in Australia are told their parent has cancer. The need to care for their parents often disrupts these young people’s efforts for increased social, emotional and financial independence.

Young people typically rise to the challenge, wanting to be a source of strength and support for their parents. This can make it hard for parents to recognise when their child might need help.

And for a parent, talking to children about their cancer may be the only thing more difficult than facing their own diagnosis. But open and honest communication about cancer’s impact can help everyone cope better.

News of a parent’s cancer

The impact of a parent’s cancer diagnosis for young people can be wide ranging and long lasting. They may experience changes in family relationships, household roles and routines and social and emotional difficulties.

Our yet-to-be-published research, presented at the recent Multinational Association of Supportive Care in Cancer conference, showed young people whose parents have cancer report levels of psychological distress three to six times higher than others their age.

Not all young people will be equally vulnerable to experiencing distress. Previous research notes factors predicting significant distress include being female, being older, having high family conflict or poor communication and having more unmet needs. More than 50% of young people have reported unmet needs in terms of information about the parent’s cancer; the opportunity for fun activities away from the cancer experience; support from friends; and help with family issues such as communication.

Having a father with cancer, rather than the mother, being closer to the time of diagnosis and having high family conflict or poor communication can predict higher levels of unmet needs. A father’s cancer diagnosis may have flow on effects on family communication as fathers tend to show lower levels of emotional expression.

Looking for combinations of these factors can help identify the young people who may be at greater psychological risk and increase opportunities for providing them with appropriate support.

An older adolescent female, for instance, whose father was recently diagnosed and whose family is struggling with conflict and communication may be experiencing high distress and needs.

A younger adolescent male whose mother was diagnosed a few years ago and whose family communicates well and without conflict may experience less distress.

Open communication is best

These findings – particularly that the number one unmet need reported by young people was honest information about their parent’s cancer – highlight the importance of good family communication in buffering distress during this difficult time.

Providing young people with information – including diagnosis, medical tests, treatment, side effects, likely outcomes and chances of recovery – in a family environment that fosters open communication is one way parents can support their children.

Parents, however, often find it hard to know how to talk to their teenage or young adult children about cancer. CanTeen is currently developing guidelines for health professionals to assist parents in having these conversations.

These guidelines will include tips such as:

  • being open and honest about the cancer diagnosis and likely impact on the young person
  • talking to young people in a way that is age appropriate but still using correct terminology
  • balancing fact-sharing with hope for the future
  • helping young people find reliable and accurate information about cancer. This might include locating support resources or helping them talk to a medical professional
  • normalising emotions and sharing feelings
  • encouraging young people to seek extra support from professionals or their peers when they need it
  • allowing for time off from talking about cancer. Young people need time to be young people.

It’s OK for parents and children to need help coping with a cancer diagnosis in the family. Organisations such as CanTeen offer a range of services and online resources for young people between 12 and 24 years who are impacted by parental cancer.

These include information books; individual support, such as online or face-to-face counselling; a peer support community; psychosocial programs; and recreational camps and activities.

For more information about CanTeen, visit www.canteen.org.au, call 1800 835 932 or email support@canteen.org.au.

The ConversationImage via shutterstock

Pandora Patterson, Adjunct Associate Professor, Cancer Nursing Research Unit, University of Sydney

This article was originally published on The Conversation. Read the original article.

  • what a really tough thing for someone and their family to deal with.

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  • Open communication is so important indeed, especially when the cancer is terminal.

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  • I am pleased to say The Cancer Council runs a similar service.
    In Adelaide the Leukemia Foundation has a huge motel/apartment style facility on large spacious property.
    For young children there is an organisation called Camp Quality which runs camps for children suffering from Cancer. It is staffed by fully trained medical assistants and other volunteers. It gives the parents and other members of the family a well earnt break. Camp Quality visits the schools that the sufferers and give talks to the other children to help them understand what is all about and why the sufferers need extra care, why they have lost their hair and wear wigs or beanies to keep their heads warm.

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  • I did not realise Canteen went up to 24.

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  • Always take the kids into consideration indeed. Some of them will otherwise suffer in silence and I fear that, in the long run, that would be even worse. :-(

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  • good advice. Communication and openess essential

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  • It’s great to see that CanTeen is available to help

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  • I agree that we must communicate and be open as possible… I wouldn’t know what I would do if I had cancer as my son is close to me than to his father. I would possibly try and find all the people ready to be there for my children if they need to speak or a hand with something. ive already had a close family friend die from cancer last fri then my uncle died from cancer last sunday. cancer doesn’t give the patient enough time to spend with familes and friends.

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  • Cancer is awful and does impact on everyone and I agree everyone must communicate and be open.


    • Thanks for the links and the number – support is good. :)

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  • A lot of people find it hard to discuss the details of their illness – let alone with their kds.

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  • Can Teen is an excellent idea for the young teens to reach out if they need help with family cancer.

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  • I can’t imagine how frightening this would be for young children.

    Reply

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