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 research, recently published in the journal Psycho-Oncology, showed young people whose parents have cancer report levels of psychological distress three to six times higherthan 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.

Pandora Patterson is General Manager, Research & Youth Cancer Services, CanTeen Australia. This article originally appeared in The Conversation on June 29, 2016.