Some straightforward advice for parents with the disease can help them make things just a little more bearable for their young ones.
Almost 25,000 children and adolescents are affected by a parent’s cancer diagnosis every year.
This is a time that can be especially distressing for teenagers, research from the University of Sydney and CanTeen has found.
A study conducted with a group of young people aged 15–25 whose parents had cancer suggests their levels of emotional stress can be up to six times higher than that of people of the same age whose parents are healthy.
Results also showed slightly higher levels of stress if the parent with the cancer was the father; and teenage girls were more at risk than boys of showing signs of increased emotional distress.
Associate professor Pandora Patterson, general manager research and evaluation at CanTeen, says living with a parent or caregiver with cancer places incredible strain on the young person – even if they are from close-knit families that communicate effectively.
“Out of a sample size of 256 young people with a parent with cancer, 61 per cent were shown to be at risk of mental health issues when compared with peers,” she says, noting this was coupled with high levels of unmet need, particularly with regard to information about their parent’s cancer.
The 2013 paper “What is Helpful to Adolescents Who Have a Parent Diagnosed With Cancer?” was printed in the Journal of Psychosocial Oncology. It highlighted the importance of the parent-child relationship during this time.
The paper identified actions parents could take, including demonstrating coping behaviours, maintaining normalcy, inviting the children to talk, being available and just spending quality time with their kids.
Healthcare professionals have a unique role to play in recognising the support needs of children and adolescents and the importance of family after a diagnosis.
This was the focus of a recent public lecture at the University of Sydney – The Kids Aren’t Alright: supporting children when a parent has cancer – delivered by Sydney Nursing School professor Kate White.
“Critical for all involved in cancer care is the recognition that cancer does not occur in a vacuum – it has a major impact on family, friends and colleagues,” she says. “When a parent has cancer, the whole family experiences cancer.”
White, who also holds NSW’s first academic chair in cancer nursing, discussed the clinician’s role in helping parents communicate well with their children whilst being mindful of kids’ emotional and psychological wellbeing.
“One of the major fears a person who has been diagnosed with cancer has is ‘How do I tell my children?” she says. “Secondly, [they question] how to support the child through this process.”
Parents are often inclined to want to soften the reality, or not tell their children at all; however, experts warn hiding information and not communicating properly may be detrimental. Most children will pick up that something is wrong anyway. Some will try and fill in the blanks themselves, which is often worst-case scenario, CanTeen’s Patterson says.
“In the research, we found that family functioning has a significant impact on both levels of distress and unmet needs in young people,” she says. “That is why it’s important we address not only the needs of the patient but of the whole family, including partners and children.”
Kim Pearce, co-ordinator cancer support group leader program at the Cancer Council New South Wales, has a background as an oncology nurse. She says one of the most important things a nurse can do is let the patient know they are happy to talk about fears or concerns in telling their children about their cancer diagnosis.
“When you are with a parent, depending on who they are, their culture and their upbringing, they could be of the attitude that they want to protect the child by not telling them anything,” she says. “You need to work with the parent and encourage them to understand the reasons why you should be truthful.”
White agrees, adding that the information will differ depending on the age and maturity of the child.
“The information should be given in an age-appropriate way and the best judge of that is generally the parents,” she says. “I think the important thing for nurses to do is reiterate the role of the parent in communicating as much information [as the child] can take on.
“Also, encourage the parent to let the school know – so they can keep an eye on the young person.”
Know your resources
Identifying and familiarising yourself with resources to assist parents and their children is important for nurses, Patterson says.
“It is essential that they are aware that these resources exist and that they are able to hand them to the parents or the young person to point them in the right direction.
“It’s also important nurses read the resources themselves because they are fantastic psychoeducation tools for professionals to help understand the experience of both the parent and the child.”
CanTeen and the Cancer Council have a range of resources available to help parents and young people in this situation. Here are three:
1 TRUCE: A new program is being developed to support young people with a parent who has been diagnosed with cancer.
Starting in early 2015, the seven-week program – TRUCE – is specifically for young people aged 14–22 and is focused on building resilience and life skills beyond having a parent diagnosed with cancer.
TRUCE is now in the evaluation stage – early results look promising.
More information can be found at truce.org.au or email [email protected]
2 Now What series: The health minister launched the website nowwhat.org.au on October 17. It’s another source of information to assist youth in dealing with either their own cancer experience or that of a family member or friend.
This is the online version of a series of printed information booklets that provide young people with age-specific information in age-appropriate formats.
3 Talking to kids about cancer: A practical resource for those needing to explain a diagnosis. This resource offers information to help parents communicate effectively with children through all stages of the cancer journey.
You can get a printed booklet from the Cancer Council or find a pdf at http://bit.ly/1obWLoK
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