Play-based interventions delivered by Child Life Specialists: Teachable moments for youth with Type 1 Diabetes

Abstract

Certified Child Life Specialists (CCLS) are healthcare team members with advanced knowledge of child development. CCLS can help establish a trajectory of engagement in diabetes self-management beginning in early childhood. This paper describes the Child Life interventions delivered in a pediatric diabetes clinic from 2003–2018, to provide youth with diabetes with support and education in a developmentally age-appropriate manner. Over the 16 years, there were 43,549 Child Life interventions, grouped into 6 categories: medical play, developmentally appropriate recreational play, therapeutic activities, health education, coping/coaching support, and procedural support. Child Life interventions occurred within the pediatric clinic in either the playroom, laboratory, or exam rooms. The CCLS team also organized other events throughout the years to maintain child/family engagement, such as a Teddy Bear Clinic. CCLS may improve a child’s experience living with diabetes, setting the stage for a future that maintains engagement in self-care and encourages good health.

BACKGROUND AND AIM

Recent studies describe an increased incidence of type 1 diabetes (T1D) (Mayer-Davis et al., 2017), one of the most common chronic diseases in childhood. Living with diabetes and achieving optimal glycemic control require constant vigilance and intervention, especially when diabetes management includes the use of advanced diabetes technologies, such as insulin pumps and continuous glucose monitors (CGM) (American Diabetes Association, 2019). While achieving glycemic targets remains critical to preserve health and prevent long-term complications (The DCCT Research Group, 1993), it is equally important to maintain engagement in self-care behaviors and to attend routine diabetes follow-up appointments. A number of studies have shown that disengagement from care and being lost to follow-up is a potent risk factor for suboptimal glycemic control and future risk for diabetes complications, including kidney and eye disease (Borch-Johnsen, Kreiner, & Deckert, 1986; Jacobson, Adler, Derby, Anderson, & Wolfsdorf, 1991; Krolewski, Warram, Christlieb, Busick, & Kahn, 1985). It is especially important to ensure positive clinical experiences for young persons with T1D during childhood so that good self-care behaviors can be established and the youth as they grow older will not be fearful of maintaining follow-up care. Such follow-up care is important to ensure timely identification of any emerging complications and to allow the introduction as new diabetes treatment tools (Kaufman, Halvorson, & Carpenter, 1999; Markowitz, Volkening, & Laffel, 2014).

Consensus guidelines present pathways to implement structured education and support to optimize diabetes-related self-care training and introduction of technologies by the multidisciplinary team (American Diabetes Association, 2019; Choudhary, Campbell, Joule, Kar, & Diabetes, 2019). For pediatric population, this education and support should be provided in a “developmentally appropriate format that builds on prior knowledge by individuals experienced with the educational, nutritional, behavioral, and emotional needs of the growing child and family” (Butler & Lawlor, 2004). Another recent recommendation for diabetes education and care highlights the need for improvement in person-centered communication, by using age-appropriate language in multidisciplinary care (Dickinson et al., 2017). One approach to incorporating child-centered language is to include the act of play in the health care setting.

The World Health Organization recommends the inclusion of play and recreation in pediatric health care settings to stimulate and strengthen the capabilities of young persons living with chronic disease (World Health Organization, 2018). Such play-based efforts can enhance a child’s learning about medical conditions and treatment protocols in order for the child to comprehend potentially frightening events and to correct any distortions or misconceptions about disease and its management (La Banca, 2019; Silva, Austregesilo, Ithamar, & Lima, 2017).

Given this potential of play-based strategies, many hospitals and clinics have incorporated Certified Child Life Specialists (CCLS) as members of the multidisciplinary team (Beickert & Mora, 2017; Lookabaugh & Ballard, 2018). Our diabetes center provides pediatric ambulatory care to about 2,500 children, adolescents, and young adults with type 1 diabetes. The pediatric multidisciplinary team includes CCLS, whose advanced knowledge of child development adds support to the care of pediatric patients and their families. This paper aims to provide an overview of a robust Child Life program embedded within a multidisciplinary pediatric diabetes program, with a specific focus on types of interventions delivered and innovative programs.

METHODS

The pediatric clinic includes 2 full-time CCLS. Over the 16 year period from 2003–2018, there were 12 CCLS who worked with youth with diabetes, with expected staff turn-over and retraining about every 2 years. Our CCLS have either an undergraduate or graduate degree in the field of Child Life, which includes internships in various medical settings. The CCLS also receive diabetes education and training once they start their job at our pediatric outpatient diabetes setting. This training includes reading materials, one-on-one meetings with nurse educators, and shadowing various providers in the clinic.

The CCLS learn about the various Child Life interventions listed below during their child life education and training. During clinic visits, youth can receive multiple interventions; the CCLS determine the category or categories best match the activities delivered.

All Child Life interventions delivered during clinic encounters were documented by the CCLS using an electronic checklist after the visits. The checklist included the Child Life interventions, which are grouped into 6 different categories of Child Life activities: medical play, developmentally appropriate recreational play, therapeutic activities, health education, coping/coaching support, and procedural support. We analyzed the computerized checklists of all interventions delivered by the CCLS from 2003–2018 using descriptive statistics performed with SAS 9.4 (SAS Institute, Cary, NC).

In addition, a subsample received a satisfaction survey generated by the coauthors. Surveys were mailed to parents of youth after one year of care in our clinic to assess their satisfaction with the Child Life program. Parents completed their surveys anonymously at home and sent them back in a self-addressed, stamped envelope, removing potential for socially desirable responses if the survey was completed during clinic.

CHILD LIFE INTERVENTIONS

Medical play.

One type of intervention involves medical play, which refers to the use of toys or medical equipment in playful, exploratory, and educational ways, in the presence of a supportive and knowledgeable adult (Moore, Bennett, Dietrich, & Wells, 2015). For example, medical play may include syringe painting using a needleless insulin syringe or making a glitter wand out of a plastic blood test tube. Children may also engage in medical fantasy play. For children with type 1 diabetes, this can include putting an insulin pump or CGM on a doll or checking a pretend blood glucose level on a stuffed animal. The Child Life team can stimulate the child to explore his or her own diabetes care challenges by using a doll (e.g. getting an insulin injection after a pump failure).

Developmentally appropriate recreational play.

Another type of intervention is developmentally appropriate play, which includes free or structured play, such as board games, play kitchen activities, model train sets, etc. This type of play occurs in the playroom before medical appointments and while the child’s parents are meeting with the child’s health care providers. This type of play allows for group activities and contributes to a child’s adaptability and social success (Werner Greve, 2016). Developmentally appropriate play is the foundation that allows for the Child Life team to develop a relationship with the child.

Therapeutic activities.

A third type of intervention includes therapeutic activities comprising of both expressive art and interactive games. Expressive art projects promoted by CCLS have goals similar to art therapy. Art therapy is often used with chronically ill children to encourage them to express their thoughts and feelings through art materials and interventions (Malchiodi, 1999). Children with type 1 diabetes can participate in expressive art projects that encourage them to share their feelings and emotions about having diabetes. For example, they can draw a picture of the hardest part of living with diabetes (e.g. checking the CGM alarms during a soccer game). The Child Life team also engages children in an adapted version of the card game UNO®. This version places a focus on feelings and promotes children to share their experiences with the group. The CCLS work to help children use therapeutic activities to effectively cope with challenging diabetes care needs. The child can make a coping kit to assist with difficulties with CGM or pump insertions. Items in the coping kit can include a pinwheel made by the child to engage in deep breathing or a decorated stress ball for squeezing during stressful home care procedures (see below for other coping strategies).

Health education.

A fourth activity area involves health education about diabetes and diabetes technologies or other health matters. The Child Life team might use interactive educational games, such as Bingo, to teach children about different diabetes supplies or common words used when talking about diabetes management. The Diabetes Bingo card helps children learn about various members of the pediatric multidisciplinary team, such as the endocrinologist, nurse, dietitian, etc. The Hypoglycemia Bingo card includes drawings of various symptoms and signs of hypoglycemia. These Bingo games (Figure 1) provide children with fun, teachable moments, and even a chance to win a small prize when they get BINGO. Another example of health education utilized by the CCLS is the medical mystery box that contains hidden diabetes supplies. The children place one hand at a time in the box, and guess what kind of object the child is holding.

Figure 1.

Diabetes and hypoglycemia bingo cards

Coping/coaching support.

A fifth type of intervention involves coping/coaching support, where the CCLS offers comfort to children with type 1 diabetes who may be struggling with management issues, such as finger sticks, injection site rotation, device insertions, etc. The CCLS aims to increase the child’s perceived skills and confidence. For example, a child may create an incentive/sticker chart to assist with a new injection or device insertion site. The child brings the chart home and adds a sticker each time he or she successfully completes the desired skill or demonstrates confidence. Often, the child will return to the next clinic visit with a completed incentive chart to share her or his success. Other coping/coaching interventions by the CCLS include asking the child questions about diabetes treatments, such as insulin pumps or CGM, and discussing these topics with the child in a developmentally meaningful manner.

Procedural support.

One specific coping-related activity is procedural support, which is the sixth type of intervention. The Child Life team supports children by preparing them for upcoming procedures and providing encouragement and distraction during the procedures. In the pediatric diabetes clinic, CCLS provide procedural preparation and support for procedures such as blood draws, insulin injections, and pump or CGM insertions. During procedural preparation, the CCLS breaks down all of the steps for the procedure so that the child can develop a sense of mastery for the procedure to help reduce anxiety (Grissom et al., 2016). Preparation is generally done with a pretend medical kit of diabetes supplies. The child can choose to see the procedure done by the CCLS on a doll or a stuffed animal, followed by the child doing the procedure on the doll. During a procedure, CCLS provide encouragement and distraction to ease anxiety related to the procedure, while enhancing confidence and building rapport with the medical team (McQueen, 2012). CCLS can engage and distract children with a book of hidden pictures, like an I spy® book or 3D I spy® cylinder, bubbles, magic wand, or an IPad® to help during procedures.

CHILD LIFE PROGRAM EVALUATION

During 16 years of CCLS services from 2003 to 2018, youth received 43,549 interventions delivered by the Child Life team. The number of interventions per visit varies from 1 to 6, as children generally receive more than one intervention per visit. The most commonly utilized interventions were developmentally appropriate play (45%) and medical play (19%), as shown in Figure 2.

Figure 2.

Child Life interventions delivered to youth with type 1 diabetes from 2003 to 2018 (N=43,549)

We performed an evaluation of family satisfaction regarding the Child Life program in a subsample (N=702) of families. Most youth were school aged (mean 9.7 ± 4.1 years), although Child Life activities included very young children <2 years of age at times. Mean duration of type 1 diabetes was 2.5 ± 1.9 years. Both males and females were equally represented among the youth receiving Child Life interventions (54% female, 46% male).

The overwhelming majority, 93%, expressed increased support from the CCLS and greater satisfaction with clinic visits due to the Child Life team. Most families (88%) found their child’s lab experience to be superior to previous experiences [15].

CHILD LIFE ACTIVITIES BEYOND THE CLINIC

In addition to activities delivered in clinic, the Child Life team promotes other events at the diabetes center throughout the year. These events include two summer activities; the first is an evening picnic dinner followed by a magic show, and the second event is a walk to Fenway Park for a tour of the nation’s oldest baseball stadium. The CCLS host an annual Halloween party in the fall where children and staff dress in costumes and engage in Halloween fun without candy, like visiting a haunted house or playing pumpkin bowling, all created by the CCLS.

Finally, the premier event promoted by CCLS is the Teddy Bear Clinic. A Teddy Bear Clinic is a one-day event in which children act as caregivers of their own teddy bears (Bloch & Toker, 2008) which happen to all have type 1 diabetes. In our Teddy Bear Clinic, children with type 1 diabetes and their families learn about diabetes self-management in a fun and age-appropriate manner at the various stations (see Table 1), like administering insulin, monitoring glucose levels, exercising, and eating healthy foods.

Table 1.

Teddy Bear Clinic station descriptions

Station Type	Station Plan	Supplies	Sample Script
Check In	Greet the patient Explain the flow Sign photo release forms Obtain bear and medical record	Bear (if supplying) Medical record Bag for supplies	“Welcome to the Teddy Bear Clinic. Here is a medical record for you to take with your bear to each station.”
Vitals	Discuss the importance of obtaining height/weight Discuss the importance of obtaining blood pressure	Scale Height ruler/measurer BP cuffs	“Bears with diabetes have their height, weight and blood pressure taken at each visit.”
Physical Exam	Inspect the bear’s entire body Check injection/pump/CGM sites	Stethoscope	“Bears with diabetes need to go to the doctor to make sure their bodies are healthy. We will spend extra time checking the sites where your bear receives insulin and where your bear checks his/her blood glucose.”
Insulin	Discuss the importance of taking insulin Discuss whether the bear wears a pump or uses injections/pens	Real or fake vials of insulin Real or fake syringes or pens (needleless) Real or fake pumps	“Bears with diabetes can give their body insulin with a pump, syringe, or pen. How does your bear get insulin?”
Blood Glucose Monitoring (BGM)	Discuss the importance of BGM Discuss how often the bear checks his/her BG	Real or fake meters, test strips, and lancet devices (needleless)	“Bears with diabetes check their blood sugar levels so they know what is going on inside their body. Bears with diabetes check their blood sugar before they eat, before bedtime, if they feel like their blood sugar may be out of range, and sometimes before, during, and after exercise.”
Continuous Glucose Monitoring (CGM)	Define CGM Discuss whether the bear is already using a CGM or is interested in starting a CGM	Real or fake CGMs	“Some bears with diabetes wear a device called a CGM. CGM stands for Continuous Glucose Monitor. A CGM lets you and your family knows what is going on inside your body between blood sugar checks. Does your bear want to wear a CGM?”
Family Support	Discuss the value of family support for diabetes tasks Discuss who is in charge of each diabetes task	Draw a picture of the bear’s family and write down or circle what diabetes tasks are done by family members to help the bear with diabetes care	“Bears with diabetes need help from their family because diabetes can be a lot of work. How can you help your bear with his/her diabetes?”
Lab	Discuss the importance of blood work at each visit	Provide pretend supplies (blood tubes, lancet, syringe) to imitate the lab setting in a pediatric friendly manner	“When bears with diabetes go to the doctor, they get their A1c taken. An A1c tells the doctor how blood sugars have been running for the past few months. Once a year, bears with diabetes get blood a draw from their arm. This helps the doctors and nurses see how the inside of the body is working.”
Hospital	Discuss that some bears are hospitalized at diagnosis of diabetes Discuss that sometimes bears need to go to the hospital to get help	Doll beds “Johnnies” for the bears	“Sometimes bears with diabetes sleep over at the hospital when they are diagnosed with diabetes or if they are not feeling well.”
Fitness	Discuss the importance of exercise to stay healthy Discuss the positive effect of glycemic control on exercise	Create an exercise activity for the bears and the children	“Bears with diabetes need to exercise to keep their bodies healthy and strong.”
Nutrition	Discuss the importance of healthy eating Discuss the importance of carbohydrate counting	Create a nutrition friendly craft (ex. draw healthy foods that your bear eats)	“Bears and kids with diabetes should eat a variety of healthy foods to help them grow and stay healthy.”
Eye Unit	Discuss the importance of getting the bear’s eyes checked annually	Chair for the bears Eye chart Sunglasses for the bear for after the eye exam	“Bears with diabetes should visit their eye doctor to make sure their eyes are healthy and strong.”
Pharmacy	Discuss picking up diabetes supplies at the pharmacy or getting them delivered through the mail	Pretend diabetes supplies	“Bears with diabetes get their supplies from a pharmacy. Some people go to the pharmacy and some people order supplies through the mail.”
Camp	Introduce the idea of attending diabetes camp	A camp related craft, like making a simple bracelet	“Many bears with diabetes enjoy going to diabetes camp. At camp, bears and kids have the opportunity to meet other kids their age with diabetes.”
ID Bracelet	Discuss the importance of wearing a diabetes ID bracelet	Create a simple ID bracelet for the bear	“It is important for bears with diabetes to wear a special bracelet that says they have diabetes.”
Research	Introduce the idea of participating in a research study	Have pamphlets for research studies at your institution	“Many bears with diabetes like to take part in a research study. Research helps us learn more about diabetes.”
Check Out	Thank them for coming Make a follow-up appointment for the bear	Appointment card with the date of next year’s Teddy Bear Clinic	“Thank you for coming to the Teddy Bear Clinic today. Before you leave, can we help you make your next appointment?”

The Teddy Bear Clinic stations provide non-threating and playful teachable moments for the child. The children and their parents also can interact with their diabetes providers in an informal setting, while learning about diabetes management. The Teddy Bear Clinic also provides a chance for children and parents to interact with other families living with diabetes, as well as various members of the clinical staff, from administrators, to nurses, to doctors, etc.

The planning and recruitment of staff and volunteers happens months prior to the Teddy Bear Clinic. When possible, the staff volunteers represent various disciplines and work at stations related to their area of expertise (e.g., a dietitian will work at the nutrition station). Adolescent patients are also recruited to assist at the various stations. In turn, these adolescent volunteers can receive community service credits for their high school requirements or college applications.

Over the past 16 years, the multidisciplinary pediatric team of medical providers, diabetes educators, and CCLS have developed this comprehensive structure and have encouraged the child participants to attend each station in the order of their choosing. Generally, at the initial check-in station, the child receives a medical record that lists all the available stations along with a new teddy bear (unless the child has brought his/her own favorite stuffed animal). The child, then acting as the caregiver of the teddy bear, takes the bear and its medical record to each station so that the bear can receive diabetes care, education, and support with the child serving as the parent or caretaker of the bear.

At the end of the event, the child takes his/her bear to the check-out station and departs with a completed medical record along with the bear’s medical supplies, for example a medical ID or a paper glucose meter that were collected at each station.

The Teddy Bear Clinic promotes positive experiences in ambulatory diabetes care, that can lead to a child’s greater acceptance of type 1 diabetes, along with the recognition of need for ongoing follow-up care (See Table 2) (Chiang, Kirkman, Laffel, & Peters, 2014).

Table 2.

Opportunities to increase understanding with Teddy Bear Clinic across developmental stages

Developmental stages (ages)	Normal developmental tasks	Type 1 diabetes management priorities	Opportunities to increase understanding with Teddy Bear Clinic
Infancy (0–12 months)	Developing bonds with primary caregiver	Preventing and treating hypoglycemia Avoiding extreme fluctuations in blood glucose levels	Provides a positive health care experience for the infant and the caregiver by interacting with providers in a non-threatening environment
Toddler (13–35 months)	Developing a sense of mastery and autonomy	Preventing hypoglycemia Avoiding extreme fluctuations in blood glucose levels, often due to irregular food intake and physical activity	Provides a positive health care experience for the child and the caregiver by interacting with providers in a non-threatening environment Offers practice of daily diabetes self-management tasks on a teddy bear (e.g. blood glucose monitoring, insulin administration, CGM, etc.)
Preschool and early elementary school (3–7 years)	Developing initiative in daily activities and confidence in self	Preventing hypoglycemia Coping with unpredictable appetite and activity Reinforcing cooperation with diabetes management plan Trusting other caregivers with a child’s diabetes management	Provides a positive health care experience for the child and the caregiver by interacting with providers in a non-threatening environment Offers practice of daily diabetes self-management tasks on a teddy bear (e.g. blood glucose monitoring, insulin administration, CGM, etc.) Empowers child who is in charge of his/her teddy bear’s care (e.g. check-in, check-out, phlebotomy, eye exam, etc.) Increases comfort with the concept that other caregivers can manage diabetes (e.g. Family support, camp, etc.)
Older elementary school (8–11 years)	Developing skills in athletic, cognitive, artistic, and social areas Consolidating selfesteem with respect to peers	Making diabetes regimen flexible in order to allow for participation in school or peer activities Educating the child about short- and long-term benefits of optimal glucose control	Provides a positive health care experience for the child and caregiver by interacting with diabetes providers in a non-threatening environment Provides integration of diabetes management tasks seamlessly into social life via Teddy Bear Clinic stations (camp, a medical ID, fitness, etc.) Allows interaction with other peers who have diabetes Enhances understanding of the benefits of optimal glucose control (e.g. CGM, research, etc.)
Early adolescence (12–15 years)	Managing body changes Developing a strong sense of self-identity	Increasing insulin requirements during puberty Understanding that diabetes management and blood glucose control become more challenging Recognizing onset of weight and body image concerns	Provides a positive health care experience by interacting with other teen volunteers and providers in a non-threatening environment Motivates adolescents to focus on their own self-care by mentoring young children with diabetes Helps to mimic transition and advanced self-care as teens take on a supervisory role
Later adolescence (16–19 years)	Establishing a sense of identity after high school	Addressing the upcoming transition to a new, adult- focused diabetes team Integrating diabetes into new lifestyle

DISCUSSION

Incorporating CCLS into an outpatient diabetes clinic adds an innovative approach to providing support and education for young patients with diabetes and their families, focused on encouraging positive health care experiences. In the clinic, patients benefit from the various play-based interventions: medical play, developmentally appropriate recreational play, therapeutic activities, health education, coping/coaching support, and procedural support.

The CCLS interventions in the clinic offer enjoyable, fun, teachable moments, which provide the child with positive experiences related to their ongoing diabetes care and their interactions with the diabetes team. In an evaluation of Child Life services in an epilepsy monitoring, ambulatory setting, surveyed families and staff reported similar, multiple benefits regarding CCLS interventions (Lowenstein et al., 2018).

The CCLS foster interactions of children with T1D with one another, reducing isolation and potentially increasing their acceptance of new approaches to care, such as insulin pumps and continuous glucose monitors. There can be reluctance to embrace new diabetes technologies, especially for young children with T1D and their families, due to fear of the unknown. Further, one can speculate that greater acceptance during early childhood may help the youth to accept and adjust to self-care behaviors when adolescence approaches.

The use of play-based interventions in health care services has been shown to improve children’s adaptation to health care and can be especially relevant in children’s adaptation to diabetes technologies. Play promotes a sense of familiarity with disease management (Burns-Nader & Hernandez-Reif, 2016). To this end, Child Life services can be helpful with the introduction of advanced diabetes technologies to young children with type 1 diabetes and their families along with promoting positive lifelong self-care habits.

Outside of the clinic, patients and their families also benefit from ongoing engagement with the diabetes team by attending summer events, the Halloween party, and, especially, from the Teddy Bear Clinic. In these events, families can connect with others living with diabetes, learn more about disease management, and interact with staff beyond the clinical arena. Moreover, events such as the Teddy Bear Clinic were found to help children cope with medical visits and reduce needle phobia (Dalley & McMurtry, 2016). The CCLS events give young patients and family members the opportunity to meet with similar families, reduce the isolation that often accompanies living with childhood diabetes, while youth learn about diabetes in a developmentally appropriate manner.

Future directions include expanding CCLS interventions, as diabetes treatments and technologies continue to evolve. For example, we might include an artificial pancreas game/activity in the playroom or as a Teddy Bear Clinic station. Future research might assess whether a child who has never used an insulin pump or CGM is more willing to initiate a diabetes technology following a CCLS intervention. Another future investigation might evaluate the impact of CCLS events on youth and family psychosocial outcomes, such as perceptions of family support, diabetes distress, or quality of life.

CONCLUSION

Child Life interventions can help set the foundation for successful future self-care as these young children mature, help build more positive experiences in the clinic, reduce anxiety regarding CGM and pump insertions, and provide ongoing support and education for youth and families living with type 1 diabetes.