How Child Life Specialists at Cook Children's Make an Impact on Adolescent and Young Adult Patients
Child Life Specialists help adolescents and young adults cope with new challenges, express emotions, meet developmental milestones and maintain a sense of normalcy.
Child Life Week: This week, we’re celebrating our Child Life Specialists at Cook Children’s who make an impact on the emotional safety of children and families in health care.
By Lauren Bridge, MS, CCLS, AYA Child Life Specialist at Cook Children’s Hematology and Oncology Center
Most often, the title “child life specialist” resonates with toddler, preschool and school-aged children. However, our scope of practice spans through young adulthood. I am Lauren, our Oncology Adolescent and Young Adult (AYA) child life specialist. The AYA population includes those diagnosed with cancer ranging from ages 15 to 39.
How is this role similar to other child life specialists?
As a child life specialist, I still provide diagnosis education, procedure preparation, procedural support and general emotional support for coping. All of that education and support is customized to meet the developmental needs of a teenager or young adult.
The medical environment can still be very confusing for our older population and the educational background of a child life specialist allows for breaking down information in easier-to-understand terms.
Let’s not forget play. Play is an integral part of a child life specialist’s role and imperative to coping well in the hospital environment.
What are the unique needs of AYAs?
First, let’s look at the developmental needs of adolescents without a chronic illness. During this stage of development, teens are seeking autonomy, making self-discoveries, learning about their changing bodies and acquiring their own set of values and morals all while their social life becomes a priority.
Throw in a cancer diagnosis and suddenly these developmental needs become increasingly difficult. Autonomy is difficult as caregivers and medical staff are constantly near with instruction, invading personal space. Cancer adds to the confusion of self-discovery. How much of their identity lies in diagnosis or not?
Changes in their body increase as hair is lost, weight fluctuates, menstrual cycles are paused and illness affects their physical well-being. Social life is put on the backburner as immune systems become low, energy decreases and feelings of self-consciousness set in. The sense of invincibility is shattered and many adolescents and young adults question their values and faith during this time.
Looking beyond the age of 18, as AYAs enter young adulthood, developmental needs continue and grow. Young adults continue to seek autonomy and self-discovery, are entering more schooling or the workforce, have increasingly more financial independence and responsibility, are exploring their sexuality, are forming intimate relationships and in some cases are starting families.
Cancer turns these developmental needs upside down. Autonomy is stunted by hospitalizations and the need for help. School or work are disrupted or put on hold. Body consciousness and side effects of chemotherapy become more prominent making exploring sexuality a struggle. As the immune system weakens, emotions run high and the body’s physical exhaustion, many find themselves isolated. Collectively making forming deep relationships challenging.
How can Child Life help?
As an AYA child life specialist, my goal is to help adolescents and young adults cope with new challenges, express emotions, meet developmental milestones and maintain a sense of normalcy.
Recognizing the importance of autonomy, I offer patients as many choices as possible. I, along with our AYA multidisciplinary team, want to give the AYA population a say in what is done to their body. Allowing our patients to share what comforts them, people they want present when ill, how much medical intervention they wish to have and end-of-life wishes give them control in a powerless circumstance.
Most often I can be found holding space in a patient’s room offering a safe place for expression, providing port education prior to the procedure, creating a coping plan with a patient, debating who will win a game of pool, exchanging jokes, giving choices for space and autonomy, validating emotions, creating art and having some deep conversations.
Building trust with the adolescent and young adult population is not always simple. For this reason, I follow the AYA patients inpatient, outpatient and in the ICU. I have to earn my space in their room. I strive to show up consistently and genuinely. It is with a true sense of honor that these amazing young people allow me to be a part of their care. I am forever grateful for this unique population and their trust in me to serve as their child life specialist.
Coming to our medical center, whether for a stay, day surgery or ongoing treatment at one of our specialty clinics can feel overwhelming and even scary to our young patients. Children and teens of all ages can feel stressed or worried during their visit. The unfamiliar environment, loss of control, fear of pain and lack of routine are among the most common anxieties young patients feel during a health care encounter. The Child Life specialists at Cook Children's are here to help.
Child Life specialists work with kids and families to make their visit to the medical center easier and more comfortable. We offer your child and your family an opportunity to express and work through any fears and concerns you may have. We'll also provide an explanation about what's going to happen during your visit and work with parents, brothers and sisters and other family members who may be involved in your child's daily care.
As a part of our commitment to family-centered care, Child Life specialists work with your child's health care team to advocate for and ensure your child's and your family's needs are addressed in the most nurturing atmosphere possible.
The Child Life program at Cook Children's offers a variety of services, all designed to make your experience at Cook Children's the best it can be. Our services include educating, preparing and supporting your child through tests and procedures, as well as coping with any life challenges you and your child may face.
Our Child Life specialists and activity coordinators also provide meaningful play and recreational opportunities for patients and siblings visiting the hospital to promote growth, development and some much needed fun. Best of all, the services are available for free. Child Life services include, but aren't limited to:
- Activities and toys for families to engage in while they are in their hospital room
- Developmentally appropriate teaching about diagnosis, treatments and life changes
- Opportunities to desensitize and explore real medical equipment through play (medical play)
- Preparation for medical exams, procedures and surgeries
- Assistance with coping strategies, distraction and/or support during stressful events
- Support to siblings and other family members visiting a patient
- Celebration of birthdays, milestones, holidays and essential life experiences
- A visit to a child's school after life-altering injury or chronic illness to help classmates understand and make it easier for the patient when returning to classes
- Developmental assessments and referrals to community resources
- End-of-life support to patient and family as well as bereavement support for family members
- Child Life Zone is a treatment-free fun zone where kids, teens and family members can go for games, art, music, reading and relaxing
- CARPE (Creative Artist in Residence Programme) connects patients to the art of healing through creative expression
- Provide information about hospital amenities