Child Life for All Ages: Empowering Children with Cancer to Thrive
Monday January 6, 2025
Retinoblastoma is a challenging journey for children and their families, often deeply affecting emotional and physical well-being long after treatment ends. Tailored support enhances quality of life during cancer care and beyond. Rb survivor and WE C Hope founder, Abby White; and Child Life Specialist, Morgan Livingstone, explore how child life specialists empower children of all ages and their families to cope, heal, and thrive.
Young retinoblastoma survivors and their siblings co-create a board game together, based on their cancer and life experience. When facilitated by a child life professional, this can be a transformative activity for older children living with a complex medical diagnosis and the stress it generates.
Caring for the Whole Child
Retinoblastoma can be a life-altering journey for any child and their family. Cancer treatment is a stressful and potentially traumatic experience that can overwhelm a child’s natural ability to cope. This can delay healing and normal development, with lasting negative effects on physical and mental health.
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. Cure is a hollow victory if the child and their family are unable to emerge from treatment with a positive outlook and joy for their life saved.
Child life empowers families to manage stressful experiences, giving them the best possible quality of life during treatment and beyond. Whatever the child’s age or stage of treatment, these supports can transform their immediate experience and lifelong wellbeing.
Prioritizing the whole child alongside their medical care can also directly impact the cost of that care. For example:
- Preparing a child for a scan can eliminate the need for daily anaesthetic.
- Procedure supports can reduce the number of clinicians needed to do the procedure, and increase everyone’s safety.
- Healthy spirits can accelerate recovery and discharge from hospital, even help boost the immune system and blood counts during chemotherapy.
These benefits collectively reduce the toll of stress on the affected child, parents and siblings, and reduce financial burdens.
Many hospitals now employ Certified Child Life Specialists (CCLS) to support children through procedures and treatment. However, caregivers, medical professionals, and others can use many simple child life approaches to help children through their cancer experience.
Child life is not an optional extra for a child with retinoblastoma. Improving their treatment experience and wellbeing will help them move forward through life as a happy, confident individual.
Child Life Specialists
Child life professionals are highly skilled individuals who help children of all ages and their families cope with medical experiences and traumatic life events. They work in many settings where children experience stress and trauma, including hospitals, funeral homes, police stations, and disaster evacuation shelters.
In hospitals, they work in inpatient and outpatient units, and specialty areas like emergency, oncology, surgery and intensive care.
Caring for the whole child, they promote effective coping through preparation, education and self-expression activities based on natural child development.
Since a child’s welfare depends significantly on the family’s wellbeing and support, child life specialists also educate, inform, support, and guide parents, siblings, and other relatives.
They may also work with schools to support a new or returning student or their supporting/bereaved friends, and with the wider community to enable general support and advocacy.
Through tailored supports for the individual child and family, child life specialists strive to reduce the negative impact of stressful or traumatic events. They promote children’s optimal growth and development through assessment, intervention, prevention, advocacy and education.
Around the world, child life specialists are known by varied titles, including “hospital play specialist”, and “child life therapist”. WE C Hope uses the title Child Life Specialist, as this is most widely recognized worldwide.
4 Ways Child Life Can Help
1. Education and Preparation
Children experience many repeat procedures during retinoblastoma care. They can quickly become overwhelming for both the child and parent if not handled with sensitivity and understanding. Lack of preparation, planning and support can lead to loss of trust, poor cooperation, delayed development and potentially life-long negative effects.
Child life specialists provide compassionate education, preparation, and direct support to help the child and parents effectively cope with, and be actively involved in their care. The goal of child life is maximum time spent on preparation, minimum time spent on the actual procedure, and minimal distress for parent and child.
Parents cannot advocate effectively for their child when they don’t clearly understand the hospital environment, its people, or language; are confused or fearful about the diagnosis, treatments, and medical procedures; or remain unaware of factors that may affect wellbeing.
Child life specialists provide information and education to parents, siblings and other family members. They help children and their families feel emotionally comfortable, keep them informed about specific aspects of the diagnosis and treatment plan, answer questions, and support both child and family to advocate for themselves.
Child life specialists:
- Familiarize child and family with the hospital environment.
- Clarify the different titles, roles, and hierarchy of hospital staff.
- Educate about the medical diagnosis and planned treatments.
- Provide preadmission and pre-surgery hospital tours and resources.
- Provide pre-visit consultations with outpatient families.
- Use non-medical preparation for tests, procedures, surgery, and treatments.
- Facilitate medical play using special dolls, stuffed animals and medical equipment.
- Prepare child and family for changes in physical appearance and/or abilities arising from the medical condition and/or its treatment, with healthy coping supports.
- Educate parents in how to care for, support, and advocate for their child.
- Develop procedure coping plans with the child and parent.
2. Support Healthy Coping and Development
Intensive treatments, invasive medical procedures, long hospital days, family separation. These are unavoidable when a child has retinoblastoma, or a risk for developing the eye cancer. But the young patient and their siblings are still, first and foremost, developing children who need a healthy, supportive environment in which to grow and thrive.
Play is the child’s way of life – their means to explore, connect, and make sense of their experiences. Through play, they express their feelings, learn about their world, and develop the skills they need to adapt and thrive.
Child life specialists harness play as a powerful toolkit to support the whole child, helping them safely learn about, prepare for, and process experiences.
Play offers a healthy distraction for the whole family in tough times, reducing anxiety and making potentially overwhelming situations more manageable. Caregivers also gain valuable insight into a child’s emotions, helping them address fears and build coping strategies alongside the child.
Child life is a lifeline for children navigating the challenges of retinoblastoma. It nurtures understanding, supports emotional resilience, and helps children and families heal – physically and emotionally.
Child life specialists:
- Support established routines, healthy bonding, and family life within the hospital.
- Facilitate and promote opportunities for normal childhood play in hospital.
- Organize special events, entertainment and activities that promote development
- Provide relaxation training, coping support, and distraction activities.
- Facilitate self-expression activities to help children explore their feelings.
- Organize and lead sibling support programs to aid healthy coping.
- Provide end-of-life and grief support (including the loss of an eye).
3. Collaborate and Advocate
Child life specialists collaborate with the full multi-disciplinary team, including doctors, nurses, social workers, psychologists, occupational therapists and physical therapists. They are a professional voice for the concerns and holistic needs of both the child and their family.
They aim to share relevant information with the entire care team, and advocate approaches that incorporate emotional support. They liaise with the medical team to support the child and family before, during, and after potentially stressful events, to encourage healthy coping.
Child life specialists:
- Champion child-friendly approaches and family-centered care.
- Work closely with both the family and medical professionals to minimize stress.
- Support, and advocate for the roles of both patient and family in the medical care team.
- May accompany a child to their procedure and provide hands-on support.
- Deliver non-pharmacological pain management.
- Help parents prepare for difficult conversations with a medical professional, or with their child, about the diagnosis, aspects of care, or something else.
4. Provide Information and Resources
Many additional resources and support services may be available, both within the hospital and in the community. Child life specialists will signpost children and their families to these opportunities, facilitate access, and advocate adaptation where necessary.
Child life specialists:
- Distribute resources to families, and review the content of noticeboards and print materials with blind or visually impaired parents.
- Identify resources and services available to their patients in the community.
- Provide information about, and referral to, hospital-based tutoring programs for school-age children.
The Art of Child Life
All children can be empowered to understand, cope with, and engage in, their medical experiences, and navigate other traumatic life events. Even the tiniest babies can benefit from techniques like infant massage and comfort positioning.
Explore the developmental issues, stressors, and coping behaviours of each age group. Discover the interventions, pain management and comforting techniques child life professionals and parents can use to support the infant, child or teenager.
Neonates - 0 to 30 days
Developmental Issues
- Startle reflex when moved quickly or hears loud noises
- Sucking reflex – sucks on anything placed in mouth
- Rooting reflex – opens mouth and turns head to the side where cheek is stroked
- Grasps and lets go of anything placed in hand
- Focuses on objects 8-12 inches away
- Hearing is fully mature
- Begins to gurgle, coo and grunt
- Moves head side to side while lying on stomach
Hospital Stressors
- Startles at loud noises and sudden movement
- Blinks in response to bright light
- Impaired basic needs
Coping Behaviours
- Crying
- Sucking
- Quiets to soft music, singing or gentle talking
- Soothes when rocked or swaddled in a blanket
Interventions
- Encourage parent presence and participation in care at all times
- Show parent how to touch or hold infant if connected to medical equipment
- Avoid quick movements
- Decrease noise levels and bright lights
- Avoid hunger and maintain warm room temperature
- Talk in soft, soothing voice 8-12 inches away from the infant’s face
Pain Management / Comforting Techniques
- Singing
- Soft music
- Swaddling
- Light up toys
- Infant massage
- Comfort Positioning
- Non-nutritive sucking – soother/pacifier
- Encouraging statements
Infants - Birth to 12 months
Developmental Issues
- Minimal language comprehension
- Development of trust
- Learns through senses
- Attachment to primary caretaker
- Meet basic physical needs
Hospital Stressors
- Separation from parents
- Impaired basic needs
- Stranger anxiety
Coping Behaviours
- Crying
- fussing
- Hand-mouth activity
Interventions
- Encourage parent presence and participation in care
- Show parent how to touch or hold infant if connected to medical equipment
- Involve parents in “comfort positioning” during procedures
- Decrease number of caregivers
- Avoid hunger
- Talk before touching
- Maintain adequate room temperature
Pain Management/Comforting Techniques
- Singing
- Soft music
- Light up toys
- Infant massage
- Comfort Positioning
- Non-nutritive sucking – soother/pacifier
- Encouraging statements
Toddlers – 1 to 3 years
Developmental Issues
- Short attention span
- Seeks independence
- Developing language skills
- Mobility is means to learning
- Threatened by changes in routine
- Learns new skills such as walking and toilet training
Hospital Stressors
- Stranger anxiety
- Change in routine
- Unfamiliar environment
- Loss of autonomy and mobility
- Back-laying position frightens toddlers
- Separation from parent and fear of abandonment
- Respond fearfully to sudden movements or loud noises
Coping Behaviours
- Regression of recently learned developmental skills
- Clinging behaviour
- Temper tantrums
Interventions
- Encourage parent presence and participation
- Expect treatment to be resisted
- Offer choices when possible
- Provide simple explanations
- Maintain daily schedule
- Allow for motor activity
Pain Management/Comforting Techniques
- Music
- Videos
- Singing
- Bubbles
- Light up toys
- Infant Massage
- Favourite object
- Comfort Positioning
- Encouraging statements
Preschoolers - 3 to 5 years
Developmental Issues
- Fears the dark
- Learns best by doing
- Limited concept of time
- Fantasy and magical thinking
- Does not understand death as final
- Increased, yet limited language skills
- Egocentric (the world revolves around me)
- Views hospitalization and illness as a punishment
Hospital Stressors
- Separation from parent
- Feels unprotected and a sense of abandonment
- Unable to distinguish between fantasy and reality
- Misconceptions develop from lack of understanding
- Heightened fears (pain, strangers, medical equipment)
- Loss of competence and initiative in developmental tasks
Coping Behaviours
- Guilt
- Fantasy
- Temper tantrums
- Aggression and anger
- Regression to earlier behaviours
Interventions
- Encourage parent presence and participation in care
- Be realistic and truthful
- Correct misconceptions
- Offer choices when possible
- Encourage child participation in care
- Avoid words that provoke fantasies (cut, bleed)
- Allow expression of feelings through play and verbalisation
- Reinforce that hospitalisation, treatments and procedures are not punishment
- Let child explore equipment and explain it in concrete terms (touch, smell, taste, sound, and sight)
Pain Management/Comforting Techniques
- Videos
- Singing
- Bubbles
- Soft music
- Humour/Jokes
- Favourite object
- Comfort Positioning
- Encouraging statements
School Age – 5 to 12 Years
Developmental Issues
- Develops concrete thinking
- Heavily involved with peers
- Concerns about body image
- Increased participation in self-care
- Active learners, invent and design things
- Well-developed language skills and concept of time
Hospital Stressors
- Fears pain
- Fears death
- Fears anaesthetic
- Loss of competence
- Loss of bodily control
- Enforced dependence
- Fears body mutilation and deformities
- Fears loss of bodily functions and/or body parts
Coping Behaviours
- Acting out
- Regression
- Depression
- Withdrawal
- Cognitive mastery
- Guilt (better able to test reality of situation, although fantasies have not entirely disappeared)
Interventions
- Give child tasks to help
- Respect child’s modesty
- Offer choices when possible
- Identify and correct misconceptions
- Encourage child participation in care
- Teach coping strategies that encourage mastery
- Give specific information about the affected body part
- Help child recognise aspects of their effective coping
- Provide age-appropriate activities that foster a sense of accomplishment
Pain Management/Comforting Techniques
- Music
- Videos
- Singing
- Humour/Jokes
- Deep breathing
- Favourite object
- Comfort Positioning
- Encouraging statements
Teenagers – 12 to 18 Years
Developmental Issues
- Needs privacy
- Socialising is important
- Rapidly changing body image
- Struggles to develop self-identity
- Body image relates to self-esteem
- Increasing independence and responsibility
- Uses deductive reasoning and abstract thought
Hospital Stressors
- Lack of trust
- Fear of death
- Restricted physical activities
- Threat to bodily competence
- Threat to future competence
- Threat of change in body image
- Loss of independence and control
- Loss of peer acceptance and/or fear of rejection
Coping Behaviours
- Conformity
- Intellectualisation
- Defence mechanisms
- Uncooperative behaviour
Interventions
- Be honest
- Allow peers to visit
- Respect and maintain privacy
- Address long-term issues in follow-up
- Involve adolescent in care and decisions
- Discuss potential psychological and physical changes
- Provide opportunity for follow-up discussion and guidance as needed
Pain Management/Comforting Techniques
- Music
- Videos/DVDs
- Humour/Jokes
- Deep breathing
- Guided Imagery
- Writing personal journal
- Encouraging statements
Child Life is More Than Play
To the casual observer, child life may seem like a lot of fun to pass the time in the hospital clinic or on the ward. Play does help keep children occupied during long, difficult hours, but it has so much more value than simple fun.
Play is the language, university and business of childhood. Children learn, interact with their world and process their experiences through play.
Child Life cares for the whole child, and play is the best way to help children understand, cope with, and engage in their medical experiences.
Play is a diversion from the rigours of hospital. Play is a distraction during difficult procedures, and a learning tool to prepare the child so they can be involved with the procedure. Play helps caregivers assess a child’s emotional state, identify anxieties and fears, and teach coping skills.
In short, while medical care treats the disease, play helps the whole child heal!
Find a Child Life Specialist
If your child’s hospital has child life specialists on staff, you will usually find them in the clinic or ward playrooms. If there is no play room, ask your child’s nurse to help you locate child life staff.
Sometimes, child life specialists will only be called to assist directly with your child if they’re having difficulties cooperating with the medical staff. However, child life is most effective if intervention can anticipate and prevent difficulties.
So don’t be afraid to ask for a consultation. If your child is struggling with medical experiences, chances are the child life specialist will be exactly the help you’re looking for!
You can find more tips for finding and working with a child life specialist here: How to Advocate for Child Life Support in Your Child’s Medical Care.
No Child Life Specialist
Don’t worry if you discover the hospital has no child life specialists. Child life approaches can be used by doctors, nurses, social workers, teachers and parents. Anyone who cares about the wellbeing of the child can learn many simple techniques to provide highly effective support.
Our Child Life section and the Child Life category in our blog are packed with advice on practical ways you can help your child. Some are general approaches. Others are tailored for specific procedures or experiences. All are fully accessible to you, and require minimal resources.
The goal of child life is maximum time spent on preparation, minimum time spent on the actual procedure, and minimal distress for parent and child.
Child life approaches help children change their experience of pain by altering the way the brain interprets sensations. Parents can use these techniques at home and in the hospital.
There are many ways you can support and empower your child with a special eye, at home, in public and at the ocularist’s office or hospital.
Children are amazingly resilient. But they do need lots of support in dealing with treatment or life after retinoblastoma. There is much you can do to help your child cope and thrive.
Children in Kenya learn about and gain confidence with the medical procedures they experience during medical care by practicing the steps on a medical play doll.
About the Authors
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.
Morgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer. She is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma.
As the Child Life Officer of World Eye Cancer Hope, Morgan contributes to the website’s Child Life sections, and speaks globally about child life supports for children with retinoblastoma.
Since 2017, Morgan provided enriched multi-day child life programming for children of all ages at the Canadian Retinoblastoma Research Advisory Board meetings and the One Retinoblastoma World conference.
Morgan also writes and creates resources for children and adults, and participates in child life research studies. She won the inaugural Innovation Grant at Operation Smile for developing an APP that uses Virtual Reality to prepare children receiving cleft lip and palate surgery for their operation.
Download Morgan’s helpful parent manual for supporting children’s worries using Worry Eaters.
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