Parents often better informed

The knowledge of how it is to be a parent of a child under 18 who suffer from cancer today is great, thanks to extensive research in the field. The rest of the healthcare system can learn a lot from this example, the researchers believe.

There is a huge difference in the approach used in paediatrics and adult medicine when it comes to the needs of the closest relatives. When a child contracts cancer, it is not just the child who is affected, but the parents and the entire family as well. Consequently, the parents of a child with cancer have long been regarded as the responsibility of the healthcare system, as a sort of co-patients who need almost as much looking after as the sick child.

"The parents need access to appropriate support and help in the healthcare system, from the point of receiving the diagnosis and onwards," says Krister Boman, associate professor in clinical psychology and researcher in the Department of Women's and Children's Health at Karolinska Institutet.

His field is clinical psychology research on paediatric cancer and he has specifically studied the needs and role of the parents. The research into the situation of relatives in cases of paediatric cancer has been much more extensive that that related to adult care in general. This is also reflected in paediatric oncology, where there is now a great deal of awareness of the signs of a crisis developing in conjunction with news about the child's disease.

"There is both healthcare personnel responsible for the medical treatment and a specific, multidisciplinary psychosocial team among the resources used to meet the parents' needs, and to offer them the help they need," says Krister Boman.

The team's duties include identifying parents with specific need for support, monitoring all of the parents and offering the support interventions that are appropriate in the various phases of the child's illness and treatment that may last over two years.

It is hard to imagine anything worse than hearing the words "your child has cancer".

"Even though the diagnosis can come after a period of uncertainty, during which you could have grown to suspect that it was something serious, the definitive confirmation is still overwhelming. The news and realisation of the severity of the disease is shocking and frightening for all parents," says Krister Boman.

Just like the relatives of adult patients, the parents also usually want to know everything about the disease, the treatment, the prognosis and what they can expect.

"Our experience, in most cases, is that they want transparent, straightforward, informative answers as soon as possible to all the questions that arise in the context, and that the opposite, wishing to avoid information, seldom happens," says Krister Boman.

He believes the parents' need to get as much information as possible is often a constructive strategy in their attempt to find a way to function and manage the situation.

"Information helps them to regain the feeling of having some amount of control over a sudden change to their lives, where they as parents no longer feel they can affect what will happen to their child," he says.

The parents go through an emotionally and psychologically stressful journey. Various psychological reactions are common, such as stress, anxiety and depression. The reactions are often severe following the news about the diagnosis and can continue into the treatment phase and subsequently. For most people, however, the psychological stress eases with time.

"For the majority of parents, the symptoms of psychological strain get close to normal levels seen in the general population when looking at it from a really long perspective, over several years. As they learn more about the disease, they adapt to the situation, see that the treatment is successful in most cases, and feel less worried and uncertain and develop a greater sense of hope," says Krister Boman.

But even in the majority of cases of paediatric cancer, where the treatment works and the disease can be pushed back, things never return to the way they were before the diagnosis. Worries about recurrence and unwanted long-term consequences of the disease or the treatment can remain for a very long time and thus constitute a source of worry and lasting stress.

"Post-traumatic stress and a tendency to suffer from chronic fatigue are examples of the long-term strain symptoms, which have been shown in studies to be characteristic and more common among parents of children who have been treated for cancer than those in the population as a whole," says Krister Boman.

Naturally, both the acute and the long-term situation are handled differently by different parents. Research has indicated certain personal factors that can be extremely beneficial. But the healthcare organisation also has an impact, and support for the parents from that direction must always be available.

"If the parents have good social support structure in their family, loved ones and social network, this constitutes a protective factor. Likewise, there are study results that indicate the healthcare organisation is of significance. For example, when we compared small and large treatment centres, reduced worry and uncertainty about the child, the disease and the future could be connected to treatment in larger specialised units where, in addition, there is the opportunity to meet other parents in the same situation," says Krister Boman.

Despite paediatric cancer now being curable in most cases, the worst can still happen. That the treatment does not help and the child's life cannot be saved.

"Despite the severity and the threat having been present all along, the loss of a child in connection with the disease not being treatable involves being faced with an additional, even harder reality. Research in this area has shown that the loss of a child to cancer leaves its mark for the rest of the parents' lives. What this mark is depends on the unique circumstances and personal factors, but also on the way healthcare professionals took care of the parents, both at the time of diagnosis and treatment and then later, in the time before and after the child's death."

Text: Fredrik Hedlund. First published in "Medicinsk Vetenskap" 4/2013.