Child Life: An Urgent Need in Retinoblastoma Care
Monday March 30, 2020
Child life can profoundly impact a child’s experience of retinoblastoma, and their quality of life. However, many children treated at specialist retinoblastoma centres lack child life support, and their parents feel unsupported, compared with other cancer patients. Abby White explores the challenges and ways to overcome them.
Comments included throughout this article were shared by:
- Members of the Rb Moms Facebook Group in response to the question: “did you have support from a child life specialist while your child was going through treatment for retinoblastoma?”
- Parent contributors to various social media discussions about the provision of child life services in retinoblastoma care.
- Contributors to Have Your Say and Through Our Eyes, sharing parent and survivor insights at One Retinoblastoma World 2012 and 2017.
Thank you to everyone for allowing WE C Hope to include your experience, insight and child life photos here.
A child life specialist uses a toy cat with removable eye to help a young girl receiving chemotherapy understand and cope with eye removal surgery and having a prosthetic eye.
Why Do We Need Child Life?
Chloe (*not her real name) was 14 months old when cancer was diagnosed in her left eye. A year of intra-arterial chemotherapy, laser and cryotherapy treatments saved her eye, but no usable vision. The experience of intensive treatment and invasive follow-up eye exams has left an indelible mark on her life. After countless general anaesthetic inductions, eye drops, blood draws and other invasive procedures, Chloe is now anxious about every hospital visit.
Immediately before hospital visits, and for some time after, Chloe becomes subdued, restless, and irritable. She has trouble sleeping and sometimes wets the bed. She plays out her medical experiences endlessly with her dolls and stuffed animals, occasionally throwing her “doctor”, “nurse” or “patient” character across the room.
Chloe’s mother also becomes increasingly anxious as each Exam Under Anaesthetic approaches. She knows there is a possibility the cancer will recur, and feels she can’t breathe until the doctor indicates all is clear. Then the anxiety builds again. Chloe has years of surveillance eye exams ahead of her, and so the cycle continues.
Before her diagnosis, Chloe was a settled, bubbly baby, always smiling, happy to be part of the action around her, and comfortable being away from her parents. Today, she is reserved, shy among unfamiliar company and large groups, and often unsure of herself. She is easily upset by too much sensory stimulation like noise and touch, and clings to her mother at the prospect of separation. All of this is a growing concern as the time to join kindergarten approaches.
Cancer treatment is increasingly recognized as a potentially traumatic experience that can overwhelm a child’s natural coping abilities. Very young children receiving retinoblastoma care are especially at risk as their bodies and minds are rapidly developing during this phase of life.
Because Chloe was diagnosed at such a young age, it’s difficult to say how much her cancer experience has altered the course of her development. Undoubtedly, her treatment journey has had a significant influence on who she is today.
Treatment requires both killing the cancer or minimizing symptoms, and caring for the child’s complete well-being, to ensure the best possible quality of life – for life. Cure is a hollow victory if the child is unable to emerge from treatment with a positive outlook and joy for their life saved.
So how can that be achieved? What can help babies and children as young as Chloe cope with such intense, invasive therapy when they are often not yet old enough to play or understand what is happening to them? How can we improve the family’s treatment experience and reduce the child’s risk of developing physical, behavioural and mental health challenges as a result of cancer trauma?
Child life is key!
“We always had child life support!! From blood draws and dressing changes to chemo, etc. Also a music therapist and therapy dog. It made a world of difference!!”
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“We never met child life. Diagnosed and first treated at the major Rb center, and now at a regional hospital.”
* * *
“Child life – What’s that?”
What Is Child Life?
Child life helps children and their caregivers manage stressful experiences, giving them the best possible quality of life during treatment and beyond. Whatever the child’s age or stage of treatment, child life interventions can significantly enhance medical care and wellbeing for everyone in the family. They can also make things a lot easier for the medical professionals providing care.
When children cannot actively engage with their care, they can become quickly overwhelmed by their experiences. Procedures often take longer, requiring more personnel and sedation. Distressed children are less able to cope with pain and strong emotions. The negative impacts of their diagnosis and its treatment increase, and their well-being declines.
Child life promotes effective coping through play, preparation, education and self-expression activities based on natural child development. Play is a distraction during procedures and a learning tool that enables the child to prepare for and be involved in their care. Play and self-expression activities help carers assess a child’s pain and emotional state, identify anxieties and fears, provide targeted supports and teach coping skills.
“At our first Rb center (a major cancer center), there were sometimes volunteers to play with the kids before EUAs, but no child life specialists. At the children’s hospital, there were certified child life specialists in both the outpatient clinic and during my son’s (very long) in-patient stays on the oncology floor during metastatic Rb and luekemia. The in-patient child life support was beyond amazing and they made the hospital a magical place. They were also instrumental in making my son’s death as peaceful and positive – if that makes sense – as it could be. We keep in touch with them to this day.”
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“Child life was awesome with my daughter. With her last MRI, the child life specialist stayed with her until they were ready to put her under anesthesia. True dedication from them. It was very much appreciated!”
Child life approaches can be used effectively by all members of the child’s care team, but they must be fully learned, understood, and valued to be effectively implemented. Child life supports are best delivered by Certified Child Life Specialists – university trained professionals who work alongside medical professionals and collaborate with the full multi-disciplinary team. They advocate approaches that respect and promote the child’s emotional wellbeing throughout their medical care. Their collaboration is particularly important during complex, intensive treatment.
“That’s the volunteers that would play with the children, correct?”
* * *
“We had a consultation with child life early on to talk about ways to help make anesthesia induction easier, and they also discussed how we should talk to our son and his older sisters about retinoblastoma. In the waiting room before EUA, there is often someone who helps play with and distract the kids, and also some clowns who come by from time to time. But I’m not sure if those people are child life specialists or if they have some other title.”
Child Life Specialists are different from hospital play volunteers. They are usually members of the hospital faculty, salaried directly by the hospital or sometimes by non-profit organizations. The American Academy of Pediatrics asserts that Child Life is a core element of effective children’s medicine, and most children’s hospitals in the developed world have a distinct Child Life Service or Hospital Play Specialist department. This department may also coordinate and manage play volunteers and visiting entertainers such as clown care, but those individuals may not be qualified child life personnel.
Child life can directly impact the intensity and cost of medical care. For example, well-prepared and supported children require less sedation or pain medication, and fewer medical professionals are needed to complete procedures. Healthy spirits heal faster, even boost the immune system, and children leave hospital sooner. Child Life supported family education also improves follow-up care, especially in resource limited communities.
“I’d like more support and preparation for the transition from EUA to office exams. This is where child life would have been so helpful. My son didn’t like the bright light during the exam and he was so afraid of getting an eye poke. The doctor wanted to return to EUA and I said OK but I think he could have done the office exams sooner with more time and patience from the doctor. We did EUAs for another 3 years after the first failed office exam. I wish I had pushed harder for more help because I’m sure a little bit of effort would have been enough and saved everyone a lot of time and stress overall.”
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“My son had radiotherapy at age 3 for bilateral Rb. He was anesthetized every weekday for five weeks, which had a big negative psychological impact. He is a cooperative child, and I’m sure he could have done the treatment awake if the time had been given to try that, but we were never given that option. I have heard of other – even younger – kids who have done radiation awake successfully.”
These benefits collectively reduce the toll of stress on the affected child, parents and siblings, and reduce burdens on the family and health care system. Ultimately, the child has a better chance of a good life with child life.
“My daughter had child life support for everything – office visits, procedures, surgeries, inpatient stays. And her brothers and sisters had lots of support too when they were with us, to help answer their questions and allay their worries. Even when we didn’t have anything specific scheduled, the child life lady came by to say hi and find out if we needed anything or had anything coming up that we wanted help with. I feel so fortunate. In my little bubble, I thought this was something all families had with childhood cancer treatment, but apparently not. It should be. I can’t imagine how we would have coped without that support…we’d be a very different family today without it.
A child life specialist blows bubbles through an anesthesia mask towards a little girl, helping her discover fun ways to become comfortable with a potentially threatening piece of medical equipment.
How Can Child Life Help Children With Eye Cancer?
Most children with retinoblastoma are diagnosed before their second birthday, and experience years of invasive procedures before they are given the “all clear”. As they grow and develop, their top concerns, hospital stressors and coping behaviours change, but the potential to support their coping never waivers.
Babies can be born with eye cancer. In retinoblastoma care, many infants have eye exams in their first days and weeks of life to screen for very early signs of eye cancer, or to deliver treatment. Screening exams are done when a parent or sibling has a history of retinoblastoma, and either genetic testing shows the baby has a risk for the cancer, or testing has not been done.
Even the youngest babies have distinct concerns, stressors and predictable behaviours in the medical setting. Child life interventions can help parents and professionals support their coping through invasive procedures to ensure their healthy development and complete wellbeing. Putting these supports in place right from the very start is vital to ensure a positive healthcare experience throughout childhood, and to lay the foundations for optimal mental health throughout life.
Supports in retinoblastoma care include:
- Procedure preparation in an age-appropriate manner
- Procedure support – using distraction, positive touch, imagery, music and voice.
- Infant massage to support healthy coping and natural development.
- Family education about the child’s diagnosis and support techniques.
- Therapeutic activities to support the child’s overall coping.
- Family psychosocial support, including sibling support.
- Loss and bereavement suppor
“Child life at our Retinoblastoma Center in a Children’s Hospital was absolutely amazing!! I cannot say enough great things about them!!”
* * *
“We were fortunate to have a child life specialist every time, distracting with toys during IV input… or bringing fresh toys to play with during a stay. The Children’s Hospital staff were amazing.”
* * *
“Locally, child life came for MRIs and inpatient stay. Never at the Eye Hospital that provided specialist retinoblastoma treatment.”
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“We saw a child life specialist twice…☹ She was amazing, but never around.”
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“We had zero support…. so sad.”
Child life specialists help children select toys and electronics to pass the long hours confined to bed, waiting, recovering, and during treatment.
A tricycle, car, truck or wagon can be a fount of imaginative play during long hospital days. It can also be a child’s choice of transport to the anaesthesia induction room before surgery. Choices empower young patients, and child life specialists help advocate choices wherever possible.
So Where Is Child Life In Retinoblastoma Care?
In the developed world, most children diagnosed with cancer receive care from a comprehensive cancer centre that specialises in the care of children and adolescents. Paediatric oncology units are also being established in many developing countries, often through partnerships and twinning programs with experienced hospitals in developed countries.
Comprehensive cancer centres use a multidisciplinary approach to care, including psychological supports that meet the specific needs of children and their families. Child life is integrated into most paediatric oncology and surgical oncology programs, delivering this support in collaboration with the medical care team.
However, informal survey of parents suggests the majority of children with retinoblastoma and their families do not benefit from these supports.
“We saw a child life specialist once during clinic for labs/check-ups. And maybe twice because our protocol required a 24 hour PICU stay after Intra Arterial Chemo, so the Child Life specialist brought toys and such.”
* * *
“I’ve seen child life maybe a small handful of times. Usually during accessing of her port.”
We see four significant challenges that impact access to child life support:
1. Lack of Child Life in Ophthalmology
Chloe was treated at a world-leading retinoblastoma centre. Her treatment lasted one year, followed by several years of very close follow up eye exams. So why did she not benefit from any of this wonderful child life support? Why did her parents not have the help and guidance they needed to support their daughter well?
All of Chloe’s care took place at an eye hospital that offered no child life support. She never received systemic chemotherapy and never saw a paediatric oncologist. So she never visited the children’s hospital where the child life program is a global leader in providing child-centred care.
This is an increasingly common experience for children with retinoblastoma as newer forms of chemotherapy are delivered during EUA rather than in the oncology clinic. When families do not have contact with a paediatric oncology service, they miss out on all the practical and psychosocial supports offered through the program – from specialist social workers and financial assistance schemes to parent support and child life.
“We had no support, from child life or a childhood cancer social worker who could plug us into all the things I saw other families getting help with. I was grateful that my son had the treatment he did to save his eye, but if I’m honest, I envied, maybe resented, all the help the families had through oncology. I felt somehow like he wasn’t sick enough and I shouldn’t complain about it, but he definitely missed out and it has hurt him emotionally. It’s hurt all of us in different ways, and I wish I’d made a bigger fuss about it at the time, because he deserved it just as much as the kids getting full chemo.”
* * *
“Child life support was rare, mainly with MRIs. We greatly lacked in support and support groups compared to other childhood cancers since we weren’t getting our main treatment at a children’s hospital.”
* * *
“We had a child life specialist visit us at the children’s hospital, during chemo, and during MRIs. Never during EUAs at the eye hospital, unfortunately.”
2. Limited Provision of Oncology Supports to Retinoblastoma Patients
Even when children receive oncology care, families may find they are not offered the same supports as patients whose primary care is directed by oncology. When retinoblastoma is contained within the eye, treatment is directed by ophthalmology, with collaboration of the oncology team. Only if cancer spreads beyond the eye does the oncology team take over responsibility for care.
As these two independent departments collaborate, there may be a failure to plan for the psychosocial needs of the child and their family. Ophthalmology may assume that oncology is delivering the supports available to all oncology patients. Oncology may assume that as care is led by ophthalmology, the family is already catered for and the child is not their responsibility. If no one asks the family whether they are receiving enough support, and the family does not know they should be asking for more, they can easily fall between the cracks.
“My daughter was treated for bilateral Rb at a regional hospital. She received systemic chemo, cryo and laser. Enucleation, then more chemo and radiotherapy to save her other eye. All with no Child Life support. Child life was present in the oncology clinic, but I think they found us to be less of a priority than other children with cancer. They acted as if my daughter was an ophthalmology patient and not an oncology patient, so somehow we had less need than other kids. We definitely didn’t receive the same supports as other oncology families.”
3. Limited Focus on the First Two Years of Life
Child life specialists may be more hesitant to work with children affected by retinoblastoma due to the combination of their young age, vision impairment and cancer diagnosis. Both sight loss and early years are highly specialist areas within the profession, and many child life specialists who are excellent care providers in oncology and surgical clinics lack the specific skillset and experience to confidently connect with and support families.
“We had no child life involvement at all until the cancer metastasized. I even BEGGED the child life specialist to help us out with enucleation. She never showed up.”
* * *
“We met child life 2 times. Literally twice and only because I went in or was introduced by the doctors. This was during the time my son was getting EUA every 2 weeks with laser and chemo every 3 weeks. In RB cases, many of us can practically live at the hospital unnoticed. Now fast forward a couple of years, we see child life at each day surgery which is a different floor than oncology. Day surgery is a floor for all types of procedures. Dental, ENT…child life is always on that floor. But oncology clinic floor….I can’t tell you who or what they look like.”
Retinoblastoma affects children under five years old – most children develop the cancer before their second birthday. But research into psychological effects of childhood cancer, and interventions to aid coping, focus almost exclusively on children over five years old. This age bias likely stems from the challenges of early years research due to children’s stage of development in areas such as speech, cognition and self-expression.
No baby is too young to benefit from psychological supports. Sadly, the attention given to neonatal and infant psychosocial supports is very poor outside the NICU at many hospitals. Investing in research that leads to published evidence of psychological supports for early years cancer patients may influence the provision of child life services for children with retinoblastoma.
4. Lack of Global Access
Child life is only widely available in the developed world. While investment in specialist care for children with cancer in developing countries is growing, programs rarely include psychosocial supports or training in skills such as child life. 84% of children with cancer of all kinds, and 90% of children with retinoblastoma, live in developing countries. So this lack of access to vital supports, and the immediate and lifelong impacts, should be a major concern to our community.
Pet therapy is a big part of many child life programs, helping to calm, comfort and encourage both children and their parents.
What is the Impact of No Child Life Support?
Without child life supports, children are less able to cope and cooperate with their medical care, and parents become more overwhelmed by the experience. Children take their cues from their parents. So when a parent feels overwhelmed by their child’s distress, the child is more likely to become increasingly anxious because of the parent’s upset. A vicious cycle emerges that is difficult to break.
The phrase “she’s so young, she won’t remember” is often spoken in retinoblastoma circles, but is untrue. It is an inconvenient truth that while survivors may not recall the details or events of their infant and early childhood cancer care, they are impacted psychologically by the experience. They remember sensations, their bodies hold emotional pain, fear and distress.
“We never had any support, and the result is a 19 year old with chronic PTSD from the pre-verbal trauma he suffered (active treatment from 5 weeks old to 22 months, EUAs until 5).”
* * *
“I wish there was more support for siblings, especially siblings who had to go through EUAs. I have 3 children. The oldest was 2 when our middle child was diagnosed with Rb. He had 8 EUAs in total and he remembers them all. Our youngest had 2 EUAs before genetic testing came back. Our boys that did not have Rb suffered the same with those procedures as our son who had Rb, especially our eldest, but they were somehow seen as less deserving of support by the medical and cancer community because they were not diagnosed with cancer. Please acknowledge siblings and what they go through – they suffer too!!”
Lack of child life expertise in retinoblastoma care creates a potentially hostile medical environment for the stressed child and their entire family, which can lead to unnecessary distress and reduced quality of life. The experience increases risk of preventable depression, post-traumatic stress disorder or developmental trauma disorder, even in very young children.
“We had child life support once when we were in oncology for an office visit. Otherwise never. My 18 year old suffers from severe anxiety, PTSD and irritable bowel syndrome all due to this childhood trauma. I believe child life would have made this less of a traumatic experience and possibly prevented this lifelong anxiety.”
* * *
“My son had bilateral Rb, diagnosed at 4 months old and treated with multiple therapies for 3 years. Two years ago (6 months after treatment ended), he was diagnosed with Autistic Disorder. He’s progressed with many therapies, and now exhibits few of the behaviors that originally led to the diagnosis. I’ve noticed that his OCD, anxiety and acting out increases around hospital visits or when he is sick. I’ve asked the doctors if he has PTSD and not autism, but everyone says he is responding great to the therapies so just be happy. But he isn’t. He still has a lot of anxiety about hospital and medical care, and if he has the wrong diagnosis, we aren’t addressing his real needs. I want doctors to agree that children with Rb can have PTSD, and actively assess children so the ones who need help can get it when they need it.”
“Our son’s child life specialist brought him craft supplies, including these big plastic googly eyes. He immediately told us all they were ‘super duper eyes’—his name for his prosthesis – and they pretended she had prosthetic eyes too.”
How Is WE C Hope Helping to Change Rb Child Life?
Children always cope best with medical procedures and treatment when they are supported by qualified child life or hospital play specialists. In the absence of that support, parents can help children cope well when they have the knowledge and tools to be effective advocates.
WE C Hope promotes child life supports for retinoblastoma families in a number of ways:
We provide information, education, guidance and practical resources to caregivers through the Child Life Resource and regular blog articles on our website. Resources range from information and guidance on general procedure preparation and support, and support through specific procedures, to pain management, living with a prosthetic eye, and psychosocial supports.
Child Life Education and Advocacy
We include child life education sessions at retinoblastoma medical meetings we host. Many sessions include a fun interactive learning element. For example, in a role play session, participants considered each step in a simple medical procedure, and how they could better support an anxious child. In a group activity session, each group produced a narrative storybook using child-friendly language and pictures to explain common procedures used in retinoblastoma care. Interactive activities encourage medical professionals to pause and view very familiar procedures as a child, to reflect on small changes they can easily make to dramatically improve the child’s comfort and reduce their anxiety.
We have established a child life training program at Shoe4Africa Children’s Hospital in Eldoret, Kenya. The innovative team demonstrate that sustainable child life provision is achievable in developing countries, and their support has a hugely positive impact on both families and medical professionals.
We also provide Child Life programing during retinoblastoma family days and medical meetings that include families. Activities are tailored to the specific needs of children diagnosed with retinoblastoma and their siblings, and cater to all ages and stages of treatment and beyond. Children and families (and rarely a curious medical professional) benefit hugely from participating in these sessions, and we are only frustrated that the sessions reach so few children.
We hope to expand provision of these immersive child life sessions for children across Canada, the USA, and more widely, as resources and opportunities allow. We hope these sessions will also provide an opportunity to share retinoblastoma specific supports with child life specialists far and wide who may be less familiar with the medical experiences and needs of young eye cancer patients and their families.
How Can the Rb Community Improve Care?
Firstly, parents please always advocate for child life support. Different hospitals have different procedures. While child life specialists may actively approach families at many hospitals to offer support, at others they may only be called in by the medical team if the child is unable to cooperate with a procedure. You may need to ask for child life to come and work with your child before a procedure, or to be a present support during procedures.
“We had to ask for child life to come to help us with things like port access and anesthesia. It was never offered by the medical professionals, and no one from child life asked if we needed anything. Another parent told me that someone told her the hospital doesn’t ‘allow’ child life to actively get involved with patient care unless the family requests it. But if no one tells us how it works and we don’t know we’re supposed to ask, how are our kids supposed to get the help they need before all the intrusive stuff has already done its damage?”
Even if you know your centre does not have child life staff, keep asking for child life at every clinic visit and procedure. When many parents ask, and ask consistently, the professionals and management will eventually respond. Only with persistent advocacy will we achieve the changes we know our children need.
“Seeing this thread made me shocked. I think we should start a movement and make them realize how important it is to have a child life specialist to provide support for every visit.”
Does your hospital have a child life department? Get to know the manager. Explain the needs of your young patients, and find out what support they can provide to your service.
If your hospital does not have a child life specialist, please give serious consideration to the value of adding this highly skilled professional to your faculty. The benefit they will bring to your care team and patient families cannot be overstated. Plan a visit to the child life department at your partner hospital to learn more about how they work with your patients, and talk with your patient families to find out what they want and need. They will help you make the best choices to serve families well into the future.
“Child life is awesome. We met the child life specialists on our very first day at the oncology floor, and our daughter has benefited so much from their support. BUT our eye care is done at a different hospital and there is no child life at all there. We have a hard time with drops, taking out / putting in the prosthetic and sometimes the anesthesia. The difference between our time at the two hospitals is so pronounced and it all relates to the child life and parent support we have through the oncology program. What about the families whose kids don’t ever need chemo? Where do they get their support? I think every eye clinic that treats children for Rb should have child life”
Identify all support services available for children with cancer and their families at your facility. If retinoblastoma care is provided across an eye hospital and separate cancer centre, establish what is available across both facilities.
If children receive care only from the ophthalmology service, but childhood cancer support services are only available to families through the oncology service, what steps can you take to resolve this gap in access?
Child life specialists coordinate end-of-treatment celebrations for children with cancer, helping them identify and process important milestones in their care and transition to the next phase with a positive spirit.
Retinoblastoma is a devastating cancer for families, regardless of the treatment or where it takes place. Every family deserves equal access to the support opportunities available in their area. In this modern age of respectful family centred care, retinoblastoma centres have a responsibility to provide appropriate psychological supports alongside advanced therapies. Integrating child life across the full service is true comprehensive care.
To learn more about supporting children through retinoblastoma care, please visit our child life Section, developed by Morgan Livingstone CCLS. There you will find guidance and resources covering many aspects of the child’s medical and psychological experience.
“Child life is amazing. They are angels!”
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.