Depending on the hospital, your child may meet a child life specialist. Child life specialists do not diagnose or treat conditions, but what they do is help children and parents understand the hospital environment and prepare for procedures and surgery. They have special training and experience in child and family development and the effects of illness and hospitalization.
The child life specialist role grew out of the recognition that the hospital experience can be very upsetting for children. Providing children with information about their condition and treatments, as well as ways of coping with stress, enables them to be more in control of their experience.
What does a child life specialist do?
Child life specialists specialize in a given medical area, so the one you will meet is experienced in helping children with a blood and marrow transplant (BMT)/cellular therapy (CT). During the meeting, the child life specialist will discuss your needs and your child's needs, answer any questions you may have and explain any procedures. They will ask about any previous hospitalizations or hospital experiences your child may have had, and whether these were positive or negative, since that will influence their ability to cope with the current procedure.
Some child life specialists use specialized medical play dolls to allow for non-threatening exploration of hospital equipment. For example, the doll may have a
central venous line (CVL) or a blood pressure cuff. They also use picture books with non-threatening images to show stages of a procedure and medical equipment. Their strategies take into account your child's developmental stage and the different ways and speed at which different children learn.
How can a child life specialist help you?
Sometimes parents need another explanation of their child's condition. You may want to know about stress your child will during the treatment, how your child will cope after returning to school or how they should discuss the situation with their peers. Child life specialists can answer a range of questions, anything from what bone marrow is and how your immune system works, to why it is important to have a healthy immune system.
They will tell you what to expect and help address concerns and ease anxieties. They will discuss coping strategies and pain management. In addition, they will share some suggestions about how to talk to your child about their condition and what items (like toys, teddy bears) you should bring to comfort your child during the hospital stay.
Later, the child life specialist may see your child as they are being prepared for a procedure or test, sometimes helping to calm them down if they are upset, or if they simply need more support. They will use strategies like blowing bubbles, counting, listening to music and deep breathing to help relax your child. They may also see your child after the procedure just to see how things went.
Child life specialists also serve as advocates for you. If you do not understand something, they will get you the information. If you have a special need or request, they will do their best to accommodate it. Because they will have spent time with your child, they will be in a good position to help make sure that developmental needs are being met over the course of the treatment. This may involve having your child referred to other professionals (for example, a physiotherapist) if necessary.
In addition to all these activities, child life specialists also organize activities such as movies, crafts and games to keep older children occupied during their hospital stay. They can also provide therapeutic play interventions to enhance coping. The child life specialist may also plan events like birthday parties.
Why is it worth meeting with a child life specialist?
A visit with a child life specialist is very valuable, even if you and your child have been through a procedure before. Your needs may have changed since then, and your child will likely have different coping and information needs as well. A child who is six, for example, will want to know more about their treatment than a child who is four. A teen may want fairly complex information.
You are also encouraged to involve your child's siblings in the hospital experience. A child life specialist can help them to prepare for their sibling's hospital stay, address any fears they have and find ways to stay in contact with their sibling during your child's BMT/CT.