Monday September 26, 2022
Medical appointments, procedures, and treatments are potentially stressful for children and their families, at all stages of their retinoblastoma experience. Child life specialist Morgan Livingstone shares 10 simple ways all medical professionals can ease stress and anxiety, support healthy coping, and help children and families thrive throughout simple interactions and complex cancer care.
This video of a physician playing and providing a developmentally appropriate distraction to a baby during routine vaccines is a great example of a simple strategy that improves patient coping during painful procedures. Baby and doctor are engaged in a playful song with sensory games that include tapping, stroking and sniffing that helps everyone cope, parents, baby and the doctor.
Caring for a child during their healthcare experience is an incredible honor and privilege. For all clinicians on the medical team, our work always needs to come from a place of caring for us to not only save a life, but also ensure the whole child survives the trauma of their medical experience as a complete individual.
Clinicians can improve connection and coping in many ways through these experiences, as well as engagement with children and families through simple, intentional actions. These improved actions have a solid foundation within the rights of children.
The United Nations Convention on the Rights of the Child (UNCRC), first adopted by the UN Assembly on 22nd November 1989, is a legal international document of unprecedented scope. With 54 articles, the UNCRC is the most widely accepted international convention in the world. It is about a child’s right to:
- Survival (preservation of life and access to healthcare)
- Protection (from all forms of abuse, harm, exploitation, or neglect)
- Development to their fullest potential (physically, mentally, and socially)
- Participation (to be informed, able to express their opinions freely, and to have their views taken into account).
Within this foundational document about children’s rights, important articles focus on children’s rights in their healthcare experience. Child Life Specialists have focused on specific UNCRC articles that speak to the rights of children within the healthcare system, translating them into the voice of the child. These include:
“I have the right to be viewed first as a child, then as a patient.”
“I have the right to be afraid, and to cry when I feel hurt or scared.”
“I have the right to be safe in an environment that is unfamiliar to me.”
So how do we honor these rights, and provide the best supports?
Here are 10 top practical Child Life tips to help you as a clinician care for your pediatric patients and their families.
Make yourself approachable by getting down to the child’s level, and speak directly to the child with simple and engaging questions and interactions.
Bringing yourself down to a child’s level helps convey friendliness and communicate openness.
Child life specialist Morgan, wearing a red clown nose, crouches down to make eye contact with a young cancer patient in Kenya.
Child and parent names, recent procedures, any issues/challenges or health concerns that have come up between visits with you? All this to say, review the file carefully before you start your visit with a patient.
It can be mentally and emotionally draining (and frustrating at times) for families to constantly repeat themselves to different members of the healthcare team. Ensure you have read an up-to-date medical record.
There are so many ways to make yourself memorable with children and families. Whether it is a distinctive hairstyle, creative self-expression, interesting buttons, colourful patterned surgical caps, or special shoes, all these features can go a long way to build rapport.
Certainly not everyone wants to “stand out”, but small quirky and unique details can be just the thing to get kids talking, smiling and wanting to connect with you.
Above: Jocelyn, a child life specialist and Morgan’s part-time intern, proudly shows her decorated lanyard/hospital badge. The bright buttons and pins capture her patients’ interest and encourage conversation.
Below: Morgan and Jocelyn pose with their retinoblastoma medical play puppet before going into the OR.
Learn about what kids are interested in by checking on trends in games, viewing and experiencing toys or activities first-hand. This helps conversations flow naturally, including clinical discussions, coping strategies, and activities beyond the medical experiences. Here are some helpful statements and engaging phrases…
“Many of my friends have been enjoying (name a show/game/band) lately. What are you interested in?”
“What is your favorite game to play lately?”
This could be a board game, video game, or a play-based game. It really depends on the child/youth.
“I always like to know what my patients are interested in….what have you been enjoying lately?”
Minecraft is a creative video game with popular characters.
Try to take some time to engage in conversations and build rapport with the patient and their family. You can do this by simply noticing a character on a patient’s shirt, or a toy they may have brought from home, and asking about it.
A young batman fan attends a Retinoblastoma Family Day in Calgary.
It is helpful to invite patients of all ages to learn more about the medical equipment and materials by exploring them together as you assess the child. A few seconds of exploring and touching something together, such as a light for examining the eye, can help a patient cope better during that quick examination.
Check out the benefits of letting children explore medical materials and equipment through medical play here on the WE C Hope website:
When extra support may be needed for the care of your patient and/or their family, make referrals early and often. Ensuring the right supports are put in place early will prevent possible coping challenges, end support the best Rb treatment outcome.
Yes, medicine is serious. But for kids, it also needs to be serious fun! Many of the conversations, procedures, examinations and explorations needed during a patient’s visit can incorporate some aspect of play. Whether it’s with or without toys, there are many ways you can “play your way” through a visit.
This anesthesiologist is doing pre-op play with a young patient before her surgery.
Try to coordinate all assessments and appointments with the greater medical team whenever possible to ensure families make the fewest possible visits to the hospital. Research shows that continuous clustered care can improve the physical growth of hospitalized infants, reduces adverse events, and improves satisfaction level for family and the medical team.
Clustering care limits the number of repeat procedures like blood draws, eye drops, cannulation, and anesthesia induction – all of which can be individually and cumulatively traumatic to patients and parents. It reduces emotional and physical stress for the patient and entire family, and decreases practical burdens, travel and housing costs associated with hospital visits.
Clustered care does not include crowding all clinicians and med students into the same room at the same time, which has the potential to overwhelm young children and already stressed parents. Assess how families are coping with your session. Consider overlapping with the next clinician, by giving a few minutes to transition from one clinician to another.
Prepare families when they may face long wait times, or long days filled with clustered appointments. Tell them what to bring so ensure they have all they need for the day.
Missing meal and naptimes may be especially difficult for some young children and their families on long appointment days. Remind families to bring:
- Important toys (simple activities and books).
- Comfort items (special stuffed animals and blankets).
- A few changes of clothes (for both child and parent).
- Diapers and changing kit, if needed.
Share our helpful list of suggested items for families to prepare and bring to clinic appointments:
Helping children and youth to be and feel successful within their healthcare experience might include keeping things simple and to the point about what they will be required to do. Whether that is completing routine procedures or taking certain medications or eye drops. Here is a helpful tool to give kids the information they need and want.
As recommended by the US Pharmacopeia Convention, children generally want to know the following information about their medicines or procedures.
1) How does the medicine taste? What does it feel like?
2) When do I take the medicine? When will this procedure take place?
3) How will it make me feel better? What will this do to my tumors/cancer?
4) How long will I take it? / How long will each treatment last? / How long will the treatment continue?
5) What are the adverse effects? How will I feel after the procedure?
6) Why am I taking the medicine/doing this procedure?
The child-parent-doctor relationship in pediatric oncology should be focused on connection, familiarity and trust. These 10 simple steps can help improve and promote coping through the highly stressful treatments ahead, and can enhance children’s confidence, leading to a sense of mastery in the medical experience.
Child life strategies help children of all ages, even babies, safely process and master their medical experiences. A commitment to coping involves the entire retinoblastoma medical team, from diagnosis, and throughout care. Watch Morgan discuss this at One Rb World 2021, with some simple examples relating to common procedures in Rb care.
About the Author
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. Morgan provided enriched multi-day child life programming for children of all ages at both One Rb World in Washington, D.C. in October 2017 and the Canadian Retinoblastoma Research Advisory Board meeting in December 2017.
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.