Author:Morgan Livingstone MA CCLS CIIT
The hospital experience can include many disruptions and can be difficult for even the happiest child. For children and families facing a retinoblastoma diagnosis and the treatments that follow, there can be a feeling of sensory overload with so many smells, sounds, textures and bright lights. The unpredictable nature of wait times can be frustrating and stressful, with very little time to transition from one appointment to another, or from one assessment to another test. So many specialists, doctors, nurses and medical team members mean many new people to meet. Changes from the familiar routine, and changes in familiar foods, and even fasting before procedures and surgeries can all add to the difficulties children and families face in clinics, hospitals and healthcare settings.
But what if there was something you could do to improve this experience? Even just a little bit?
With a little preparation for upcoming procedures, check-ups and tests, children of all ages can cope better.
Why is preparation helpful to a child?
Decreases fear and anxiety.
Promotes long-term coping to medical challenges and experiences.
Increases cooperation with medical team.
Clarifies misconceptions and misinformation.
Some simple ways that parents and caregivers can prepare children for upcoming appointments can start with using familiar wording and strategies to keep things consistent. Focus on the sensory experience and gently offer positive touch in areas child(ren) may be touched often like their faces, near and around their eyes. Take turns with this gentle play and let your child practice these gentle touches and strokes on your face as well. Parents and caregivers are being watched by children at all times, so you can also model appropriate behavior and use stress management techniques to improve you own coping. Offer children coping strategies – this can include something as simple as a hug, or pacifier, or deep breathing activities like blowing bubbles or a pinwheel toy. Naturally parents can offer positive reinforcement and verbal praise as children learn to navigate their medical experience, learning what they need to do to be and feel successful.
A collection of coping strategy cards for children to explore.
Teaching steps and skills using stories:
Children learn a great deal about social norms through stories. Whether you tell stories verbally, read books together, listen to audiobooks, or even sing songs that tell stories, these are wonderful ways to communicate and explore what happens in different situations and what to do or how to do something when facing a challenge. It can be fun to create your own family songs for different routines like bath time and mealtimes using a familiar melody from children’s songs and nursery rhymes. Songs can also be created to help prepare and explore the steps a child goes though during medical experiences.
Here is an example of a creative song about an Eye Ultrasound, sung to the tune of Jingle Bells:
Slip and slide
Slip and slide
On the special jelly
Cold and wet is how it feels to help you see inside!
Written by Daisy Lloyd and Morgan Livingstone
There are many helpful published books that explore hospitalization and medical experiences for children of all ages. Many can be found at mainstream bookstores, while more specific RB focused books can be found though charities like CHECT here:
Social Narrative Stories:
Social stories were developed by Carol Gray in the 1990’s as a way to explain social interactions and situations for young children. Though the extension of these social stories, child life specialists and parents can create customized narrative stories for children with RB to help familiarize and prepare them for routine procedures and any other aspect of care that they will experience over the course of their treatment.
There are some simple components to consider when creating your own social narrative story:
- Sensory Components
- Appropriate Behavior
- Short/Concrete language
- Key Details
A team of child life specialists and psychologists at Boston Children’s Hospital have created many FREE preparation stories for difference medical experiences and appointments that you can download here:
Big thanks to child life specialists Kristin Dietzel and Andrea Lerude, and psychologist Dr. Carrie Mauras.
Here is a narrative social storyto help prepare a child with RB (and their family) for a routine Examination Under Anesthesia.
Preparing for an EUA book
Environment and preparation:
Despite all the knowledge we have about the benefits of a child friendly environment on a child’s medical experience, not all clinics are child friendly. Parents can improve this routine experience by planning ahead and bringing familiar items with them that will help make this space more comfortable for their child. Bring your own favorite story books, a blanket, pillow or special stuffed toy that helps as a comfort item for your child and even consider “creating” a safe space for your child within their stroller.
When appropriate, always bring favorite snacks and a few quiet activities that will help your child engage in play, express themselves and offer normalization.
When creating social narrative stories, you can take actual photos of the hospital or clinic environment with you and your child in the photos. This can help with familiarization and preparation for each step of your visit, assessments and procedures. However, as children get older they can be encouraged to help with the creation of these stories and assist by writing the narrative, drawing the pictures and adding the details they feel are important to them…..especially whether they think pizza or ice cream is needed at the end of the story.
Teaching children coping skills can become a creative opportunity to use imagination to relax your body. Here is an example of a simple coping skills story using mindfulness meditation created by a child and a child life specialist:
WE all want the best for children:
Best possible outcomes mean’s working together to prepare and communicate the medical experience clearly so that children know what to expect and can practice these steps, which promotes mastery. Creating social narrative stories can be a fun part of everyday life, like mealtimes and toileting, or it can have an important purpose in preparing them for upcoming procedures, appointments and examinations.
Work with your medical team to ensure you know what to expect, talk to other families about their experiences, and seek out help from Child Life so that you can better prepare yourself and your child for appointments. This can reduce stress and relieve undue worry that many children and families face when they don’t know what will happen, and imaginations can run wild. Instead try using imagination to create stories, songs and narratives you will all enjoy together!
About the Author:
Morgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer that is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma. Working as the Child Life Officer of World Eye Cancer Hope, Morgan contributes to the website Child Life Sections, and speaks globally about child life supports for children with RB. Most recently, Morgan has been providing enriched multi-day child life programming for children of all ages at both the 1 RB World meeting in Washington, D.C in October 2017 as well as the Canadian Retinoblastoma Research Advisory Board meeting in December 2017.
In addition to her work with RB, Morgan writes and creates resources for children and adults, participates in child life research studies, and was the winner of 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.
Morgan’s helpful parent manual for supporting children’s worries using Worry Eaters