Monday July 31, 2023
Retinoblastoma is highly stressful for most patients and their families. Too often, it is a traumatic life experience that has long term impacts on mental health. Jules Verdugo, child life & pediatric psychosocial care student, looks at the difference between normal stress reactions and PTSD, symptoms, how to get help, resources, some strategies for managing symptoms, and post traumatic growth.
If you feel that you or a loved one is struggling with Post Traumatic Stress Disorder or other mental health concerns, please reach out to a doctor or mental health professional.
Stress, Fear, Paranoia, Worrying…
Is stress, fear, and worry normal when your child is going through the cancer journey?
The answer is yes! To a certain extent, all of these feelings are normal responses to an abnormal situation.
So when does it become a concern? When these feelings (or the below symptoms) begin to interfere with your activities of everyday life, it might be time to talk to a doctor or mental health professional about how you are feeling.
Post-Traumatic Stress Disorder (PTSD)
PTSD is an anxiety disorder that some people develop after experiencing or witnessing something that feels traumatic. This can include a child’s cancer diagnosis or treatment.
Tons of research suggests that caregivers experience higher rates of PTSD than the general public, developing the disorder anywhere from 3 months to 5 years or more after the cancer journey begins. If this is you, please know that your experience is valid and you are not alone.
PTSD can occur in adults, adolescents, and children. It can arise months to years after a traumatic event(s) that occurred at any age in childhood. Any experience that feels to the individual like it threatens their safety or livelihood can be coded in the brain as traumatic, and potentially result in symptoms of PTSD. Childhood PTSD and trauma specifically can have significant and lifelong impacts on an individual’s emotional processing, baseline anxiety and mood, as well as their ability to deal with future distressing events.
Signs and Symptoms of PTSD
There are many symptoms of PTSD; the symptoms listed below are only the most common. If you have some symptoms of PTSD but feel they are mild, your experience is still valid; you still deserve access to treatment and resources. If the symptoms below interfere with your daily life, please seek help from a doctor or mental health professional – you deserve to heal.
Common Signs and Symptoms of PTSD include:
- Nightmares surrounding the traumatic events.
- Intrusive memories/flashbacks or feeling like you are ‘reliving’ the traumatic events.
- Avoiding places, people, scents, and things that remind you of the traumatic events.
- Difficulty sleeping and concentrating.
- Loss of interest (in relationships and activities that you used to enjoy).
- Consistent feelings of fear, anxiety, and anger.
- Overall decrease in mood.
If you or a loved one is struggling with symptoms of PTSD, there are lots of options for treatment and ways to get help. The first step may be to contact a family doctor/general physician or mental health professional. PTSD can be treated with psychotherapy (often referred to simply as “therapy” or “talk therapy”), medication such as antidepressants which may increase mood and decrease PTSD symptoms, support groups, and more.
Treatment and help look difference for each person. You can also explore the resource below, which offer useful explanations and further guidance:
- InnerBody | Irauma Facts and Resources guide
- The Centre for Addiction & Mental Health (CAMH) | module on PTSD.
- National Alliance on Mental Illness (NAMI) | information about PTSD.
- Anxiety & Depression Association of America | PTSD Resources.
- PTSD Association of Canada.
- Assist Trauma Care UK.
- PTSD UK.
Children under the age of 4 years are particularly vulnerable to stressful events that can happen during hospitalization and healthcare interactions. These experiences can be described as medical trauma. Children at this age are more at risk because their brains are still developing an understanding of what is reality and imagination – they operate at the intersection of both, which is called “magical thinking”. They are also often still learning the basics of emotional regulation and coping.
There is currently a limited amount of research around medical trauma and PTSD in children under 5 years old, and none specifically focused on children diagnosed with retinoblastoma. This is an urgent Rb research need, especially as children increasingly endure longer and more invasive treatment journeys in their early years.
When children of this age develop PTSD, symptoms might include:
- Fear of strangers.
- Recalling stressful memories.
- Trouble sleeping.
- Bed wetting.
- Low mood.
- Trouble concentrating.
If you feel your child is experiencing symptoms of PTSD, or has a hard time with medical experiences, here are a few things you can do:
- Talk to your healthcare provider. Let them know what you’ve observed and ask what can be done to help.
- Ask if your medical facility has a child life specialist. Child life specialists help children and families cope with hospitalization, healthcare and stressful experiences. A child life specialist may be able to offer strategies and support for you and your child. Find out how to advocate for child life during your child’s medical care.
- Seek help from a mental health professional. Sometimes children need extra help processing an experience that their brain has determined to be traumatic, which can lead to various symptoms and struggles associated with PTSD. Ask the Rb program or your family doctor to refer your child to an appropriate professional such as a pediatric psycho-oncologist (a child psychologist who works with patients and families affected by childhood cancer).
- Encourage your child to talk openly about their stressful experiences, and highlight their strengths throughout that experience, while also validating that it was hard.
- Talk with your child about their medical experiences. Children and teenagers who have no cognitive memory of their medical encounters may have very confusing and overwhelming emotions when their body and mind holds physical and psychological memory of trauma, with no explanation for those feelings. They may also have trouble recalling medical interactions, and sometimes their brains can fill in the gaps with something else. They need specific details to piece together what they are feeling now with their past experiences, and make sense of their emotions. These conversations can take a long time, and may need the help of a professional to support both you and your child.
Seeking help for healing is very important. So is having healthy coping tools to manage the symptoms of PTSD and strong emotions when they arise.
Three of the best strategies to help manage acute symptoms of PTSD and feelings of stress, fear, or worry are grounding, deep breathing, and affirmations.
Grounding is a way to remind yourself that you are in the present moment. There are many different grounding techniques. Try the “5, 4, 3, 2 ,1” strategy.
Sit on the ground or in a chair and focus on being in the present moment. Notice 5 things you can currently see, 4 things you can presently touch or feel touching you, 3 things you can hear, 2 things you can smell, and 1 thing you can taste.
This may be especially helpful during flashbacks, intrusive memories or feelings of heightened anxiety.
Deep breathing has been scientifically proven to help our body feel calm and safe during feelings of distress. Square breathing is a special type of deep breathing that also helps to focus your mind on a specific breath pattern. You can trace the pattern on the image below, or imagine the square while you inhale for 4 counts, hold for 4, exhale for 4, hold for 4, and begin again.
Affirmations are phrases you can say to yourself as a reminder, mantra, or goal. Over time, affirmations may also help to increase mood, optimism, and positivity. Some affirmations that may be helpful for feelings of worry and stress or symptoms of PTSD include:
- “I am present”.
- “I am safe”.
- “This will pass”.
- “I am protected”.
This beautiful video shows an example of positive affirmations and self-talk. Watch it by yourself or with your child.
Taking care of yourself is important, and investing in your own coping and wellness is also an investment in your child’s coping and wellness. Research shows that when parents cope better, children cope better. There are few more important times to show yourself the same compassion, care and love you would give a struggling friend.
Remember to validate yourself, and be gentle with yourself because healing is not linear. It may help to confide in a loved one, friend, or support group, and it will also help to get to know your triggers so you can plan ahead and take extra care when you know you will encounter them.
“Post traumatic growth” refers to the positive growth and change that can occur in someone’s life when they begin to heal from a traumatic event.
Some people who experience trauma feel these events had a transformative impact on them; they become more appreciative of certain aspects of life. They may feel they have a better understanding of people, the world, and themselves, and may also experience any of the following signs:
- A values-driven shift in priorities.
- More meaningful relationships.
- An increased sense of personal strength.
- A richer existential and spiritual life.
- An increased appreciation for people, experiences, and life.
- A positive attitude.
- Stronger will.
- Increased patience.
- New beliefs.
Supports that improve coping and reduce trauma risk are now widely available to children and families in developed countries. Activities and services are provided through hospital-based child life programs, community service organizations, and childhood cancer and vision rehabilitation non-profits.
Child life is one of the best ways to help reduce trauma risk from retinoblastoma. WE C Hope is concerned by the limited provision of child life within ophthalmology programs treating children with eye cancer, and continues to advocate for full integration of these vital supports. As well as providing child life programs and education at events like One Rb World.
In developing countries, psychosocial supports are expensive and uncommon “luxuries”. Where they are available, these limited professional resources are vastly over-stretched, and rarely trained to work with children. Families experience high rates of stress and PTSD, though lack of research funding means the true figures are unknown.
Since 2008, WE C Hope’s Child Life Director, Morgan Livingstone, has been training child life specialists in Kenya, in a program that remains unique on the continent. Child life training in Africa helps build sustainable psychosocial support for children and families throughout clinical care – interventions that are shown to reduce medical costs, increase patient and clinician safety, improve coping, and hasten recovery.
A combination of intensive on-site training, remote learning, and mentoring is cultivating competent child life specialists locally, and a centre with capacity to host trainee child life specialists from across Africa. The Kenyan Child Life team now includes:
- 2 certified child life specialists who lead, supervise and teach others.
- 5 child life specialists who deliver procedure preparation, medical play, coping support for children and youth during procedures, non-pharmacological pain management and provide illness specific education to help children better understand their healthcare experience.
- 5 child life assistants who provide bedside play opportunities and creative arts experiences.
- 4 playroom supervisors who offer daily unique play activities in each of the hospital ward playrooms.
- 1 child life technology specialist who manages all technology including tablets for procedure preparation and distraction, video game systems and music options. Organizing daily group video game play times and large scale art projects, this unique technology position is one of only 50 worldwide.
Members of the Kenya Child Life Team.
Child life team members and medical professionals regularly train as certified infant massage instructors to support the comfort and care needs of babies and young patients.
Training has recently expanded into local hospice services, meaning children are supported through play and legacy building to live their best life at the end of life.
In memory of child life specialist Jayne Kamau, WE C Hope created a special low profile playground for children with visual impairments and other disabilities to enjoy safely with other young patients.
The child life team has developed child life courses for medical professionals, fostering child-friendly practices and stronger coping supports during hospitalization. They are now working on creating and implementing the required child life courses to be eligible for certification within the local hospital college.
In August 2023, Morgan and Kenyan child life program director Liz Kabuthi, will present on psychosocial oncology for children and families experiencing retinoblastoma at the inaugural International Society of Ocular Oncology (ISOO) meeting in Mombasa, a testament of the team’s commitment and impact.
Bedside distraction play.
Medical preparation play
As travel has opened up again post-pandemic, this year is a BIG step into supporting the growth of child life specialists and child life practices in paediatric healthcare in countries beyond Kenya.
However, the cost of running this annual advanced clinical child life training has significantly increased due to the current financial climate. WE C Hope urgently needs your help to continue building child life supports for children with eye cancer and all seriously ill children in Kenya and throughout Africa.
Training has expanded to the local children’s hospice. Morgan and her team hope to welcome child life interns from Ghana and South Africa as they move closer to becoming the first child life specialists in their country to fully train and qualify in Africa. The new training location requires additional funding to ensure a well-delivered and thorough training for the entire team. Your support can make this happen!
With your financial gift, WE C Hope can continue to support child life specialists in Kenya and build child life programs across Africa through this one-of-a-kind annual child life training. Please help this dedicated team to continue teaching invaluable clinical child life skills that improve coping and quality of life for children facing illness, trauma and end of life in hospital. Together, we can all make the difference they need today.
Thank you so much!
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About the Author
Jules Verdugo is a child life and psychosocial care student at McMaster University, on her way to becoming a child life specialist. She has worked in many clinical areas, including burns and plastics, emergency medicine, ophthalmology, urology, oncology, general pediatrics, hospice care, and more.
Jules has a strong passion for trauma prevention, and taking a biopsychosocial approach to healthcare – caring for the whole child and family. Her research interests focus on individuals with inflammatory bowel disease, and the need for child life specialists supporting this population.
Jules was inspired to become a child life specialist when she received child life support as a patient in her early teenage years. She is excited to see and be part of how psychosocial supports in hospitals continue to grow over the coming years.