Childhood cancer is a major life experience that can significantly overwhelm a child or parent’s coping resources. Identifying families most at risk, and providing holistic supports early is vital to prevent traumatic stress.
Many families receive compassionate supportive care to help them navigate the high stress of diagnosis, treatment, recovery, relapse, more treatment, follow-up, and life beyond cure. But for some families – parents, carers, patients, and siblings, the unrelenting experience of childhood cancer can lead to post-traumatic stress disorder (PTSD).
What is PTSD?
PTSD develops after a traumatic experience that caused the individual to feel helpless and fear for their life. PTSD symptoms include:
- Flashbacks, recurring memories or nightmares about the event.
- Intrusive and unwanted thoughts and images
- Avoiding people, places, events, or objects associated with the experience
- A need to stay active and busy all the time
- Using alcohol or drugs to numb emotions
- Feeling detached from emotions, and from other people
- Feeling tense, anxious, and being easily startled.
- Difficulty concentrating on simple tasks
- Difficulty falling asleep or staying asleep
- Feeling irritable and having angry or aggressive outbursts
- Self-destructive or reckless behaviour
- Difficulty remembering the traumatic experience
- Loss of trust and a sense of safety
- Distorted thoughts about the trauma
- Overwhelming negative emotions
- Loss of interest in previously enjoyed activities
- Difficulty feeling positive emotions
These symptoms are a natural reaction to stressful events when they first happen, protecting us, helping us process and heal from the experience. But PTSD may be developing when a person has many symptoms, if they persist for more than a month, or they interfere with daily life.
Who is at Risk of PTSD?
Post-Traumatic Stress Disorder (PTSD) is a real risk for all members of the family affected by retinoblastoma (parents, siblings, and the patient). Researchers from Children’s Hospital of Philadelphia found that 30-45% of parents and siblings, and 15-20% of childhood cancer survivors experience symptoms of PTSD years after treatment has ended.
Research of PTSD and other late effects in the childhood cancer population is almost exclusively focused on children diagnosed after five years of age. Personalities are well developed by this age, and as the children are verbal and able to articulate themselves at diagnosis, clear baselines can be more easily documented.
There is a dearth of research exploring mental health and trauma outcomes from diagnoses before five years of age, and among retinoblastoma survivors and families specifically. We don’t know if the trauma profile documented in the general oncology population is reflected in the retinoblastoma population – it may be the same, better or worse.
Multiple factors may influence the risk, including the young age of patients at diagnosis, multiple frequent invasive and often painful procedures over many years, treatment outside the oncology department without established oncology supports, and sight-loss. Genetic implications may also be involved, such as having more than one affected child, passing on the RB1 mutation, and lifelong risk of second cancers.
Can Post Traumatic Stress Be Prevented?
“Cure” does not simply involve ridding the body of cancer. It means healing the body, mind and spirit of the cancer burden, so the affected person and their family can thrive beyond the experience. Developing and implementing trauma-risk assessment and prevention programs is an essential part of medical care for the child and their entire family, to aim for effective holistic cure.
Trauma prevention programs recognises that PTSD is a major issue for all members of the family affected by childhood cancer. They use various assessment tools to identify individuals and families most at risk, and provide support services and activities early to reduce trauma risk from the cancer experience.
Initiatives like this Trauma Prevention program developed at Children’s Hospital of Philadelphia can help identify individuals and families most at risk before problems escalate, and ensure early support to reduce the trauma burden.
Trauma assessment and prevention initiatives in paediatric oncology are usually provided through the paediatric oncology service. They may be delivered in collaboration with allied teams such as psychology, child life, and social work.
What About Retinoblastoma Care?
Many retinoblastoma patients now have no contact with paediatric oncology, as treatment and follow-up care is received solely through the ocular-oncology program. The ophthalmology department may or may not be located in a paediatric hospital with easy connection to paediatric oncology.
When a family has little or no interaction with a paediatric oncology program, they are at high risk of missing out on child and family supports offered through the program, and the oncology outpatient treatment centre. They may struggle to access support services either because they are unaware of them, or because they are unable to access them from outside the paediatric oncology program.
Retinoblastoma patient families need access to trauma prevention programs, like any other families affected by childhood cancer, including all families treated exclusively within an ocular oncology service. Collaborative care between paediatric oncology and ophthalmology can ensure these services are extended to every patient family. Preventing problems by providing the right psychosocial supports from the time of diagnosis is an important goal in delivering complete family and patient focused care.
How Can We Access Trauma Prevention Supports?
If your child receives care through a paediatric oncology service, check in with the child life / hospital play specialist, nurse specialist, or oncology social worker to be sure you are receiving alerts about available programs. Ask what is available and how you can be notified when new opportunities arise.
If your child does not receive care through a paediatric oncology program, it is vital to ask if you have been connected into all the supports on offer at the hospital for oncology families. If the eye centre is part of a different hospital from the paediatric oncology service, ask specifically about supports available through the other hospital.
Ask the child life / play specialist or social worker serving your department what supports are available through paediatric oncology, and how you can be connected to them. Alternatively, ask your child’s ocular oncologist for referral to the paediatric oncology service so your family can access relevant supports available to other childhood cancer families.
Some enriched support programs are available within the hospital, while many others are available in the community through cancer specific charities and groups. Recently, more of these support programs have been made available virtually.
For all families, be aware that support programs may be promoted on patient/family noticeboards. Ask how the department shares information. If a noticeboard is used and you have limited sight, ask at every visit for someone to review the contents with you, to ensure you do not miss out on new opportunities. If you need information provided in a particular format for accessibility, ensure the team is aware of and understands your specific requirements.
