The journey of uncertainty: importance of psychology

The journey that follows childhood cancer diagnosis is one of the toughest to imagine – it is filled with a myriad of stressors and uncertainty. Research in this field has attempted to answer the question of how children and their families deal with the stressors that are initiated by the diagnosis of pediatric cancer, the treatment that ensues and beyond.

The journey that follows childhood cancer diagnosis is one of the toughest to imagine – it is filled with a myriad of stressors and uncertainty. Research in this field has attempted to answer the question of how children and their families deal with the stressors that are initiated by the diagnosis of pediatric cancer, the treatment that ensues and beyond.

What happens after diagnosis is that throughout the harsh treatment children most often report being lonely and isolated, commonly accompanied by emotions like anger and fear. They feel like they have lost their normal childhood, they become alienated from their friends, they feel like their friends are not able to communicate with them anymore because everyone is afraid of what might happen. Children might even think that cancer is contagious.  Although treatment varies in length and intensity, the most acute mental and physical health implications last for at least one year, often longer. The disruption of one’s life is already incredibly stressful but side effects of treatment such as hair loss, weight gain/loss are as difficult to handle at an age when looking different from others is particularly devastating. Read more on the topic.

Unfortunately during this difficult journey a sizable number of children with cancer will be affected by mental health issues. It has been shown that not only children who are going through treatment have more mental health problems but it goes beyond treatment – also survivors report struggling with mental distress more often than their healthy peers.

Children with cancer are most commonly facing depression or anxiety. We can also call it psychological distress because not everyone meets the criteria for a mental disorder as defined by the diagnostic criteria of DSM or ICD. Psychological distress can be defined as upsetting or aversive feelings or affect experienced by an individual, which may include symptoms of anxiety or depression. There are several interventions targeted to decreasing psychological distress and increasing psychological adjustment in pediatric oncology but only modest support is provided for the effectiveness of the available interventions.

American Academy of Pediatrics Section on Hematology/Oncology Children’s Oncology Group (well, that’s one long name!) has identified most common psychosocial problems faced by pediatric cancer survivors. These are social withdrawal, educational problems, depression, anxiety, post-traumatic stress. Moreover, two thirds don’t follow health promoting behaviors after treatment, survivors engage less in physical activity and fall short of recommended nutritional standards among other issues. Some have proposed that these might be accompanying issues of mental health problems. Read a good review of the topic.

However, not all children with cancer develop mental health problems. Recent review with a focus on depression has proposed a life course framework for the development of mental health problems. Life course trajectory essentially means that there are several factors influencing the manifestation of mental health problems including biological, individual, family, community and global issues and these factors play a role already from pre-conception to adulthood. What we can learn from this kind of review is that there are so many factors influencing the possibility of developing mental health problems in children with cancer that it would be very difficult to identify individuals who are at the highest risk in order to prevent their problems. But we can and should improve the access to mental health services for all children with cancer. It should be the priority of integrated care and will be our contribution.

We are creating a mobile application that supports the goals of childhood cancer treatment through a game environment with a focus on the mental state of a child. Our contribution is highly needed as 75% of pediatric cancer patients report that they are not even reaching out to mental health professional about their mental health issues. They are alone with their problems. Current guidelines also place relatively less emphasis on mental health compared to physical health.

To highlight the importance of psychology in pediatric cancer even further, we end this post with seven key contributions of psychologists to collaborative and integrated care in pediatric cancer (Based on a review article published in American Psychologist):

- Managing procedural pain, nausea, and other symptoms

- Understanding and reducing neuropsychological effects

- Treating children in the context of their families and other systems (social ecology)

- Applying a developmental perspective

- Identifying competence and vulnerability

- Integrating psychological knowledge into decision making and other clinical care issues

- Facilitating the transition to palliative care and bereavement

This blog post is written on behalf of three psychologists in our Triumf Gamification team. During cancer research month we wrote about several topics from prevention to survivorship, read our summarizing blog post. We have also discussed the importance of integrated healthcare.