Children and teens with blood disorders need a team of experts who can provide diagnosis, treatment, and ongoing care. Blood disorders include sickle cell disease, anemia, hemophilia, platelet disorders, and other conditions that affect the blood and how it works.
Hematology is the area of medicine that focuses on blood and blood disorders. Your child’s hematology care team includes doctors, nurses, and other health specialists. Care team members may change depending on your child’s needs and treatment plans. There may be many specialists as part of the care team or only a few.
The hematology care team includes different specialists to treat and support patients with blood disorders.
Core hematology care team
Your child’s main care team will likely include one or more of the following health care providers:
Pediatric hematologist: specializes in blood disorders in children. This doctor directs and manages your child’s blood disorder treatment.
Registered nurse (RN): provides a variety of patient care tasks. Nurses monitor your child’s health, give medicines, provide patient and family education, and help with daily care and treatment needs.
Advanced practice providers (APPs): work under a doctor’s supervision to help care for your child. They can do physical exams, plan care, prescribe medicines, order and review tests, and perform certain procedures. In some cases, an APP may be your child’s main health care provider. There are 2 kinds of APPs:
Physician assistants (PAs)
Nurse practitioners (NPs)
Nurse care coordinator: specialized registered nurse who ensures coordination and continuity of care throughout your child’s hospital stay. Care coordinators serve as a central point of contact for patients, families, and the medical team. They assist with care planning, provide education, answer questions, and help address any concerns that arise. They support communication among providers and help prepare families for transitions, such as discharge from the hospital.
Care team during diagnosis and treatment
Each patient is different. Care team members will work to meet your child’s specific needs.
Radiology or imaging technologist (also called a tech or radiographer): uses x-ray, CT, MRI, PET, nuclear medicine tests, and ultrasound to create images of the body.
Surgery
If your child needs surgery, surgical team members may include:
Surgical specialist: a doctor who does specific types of surgery. For example, a neurosurgeon performs operations on the nervous system, including the brain and spine. An orthopedic surgeon specializes in surgery of the muscles, joints, and bones.
Anesthesiologist: a doctor who gives anesthesia to prevent or relieve pain. They monitor patients during surgery or other procedures.
Certified registered nurse anesthetist (CRNA): a registered nurse with advanced training in anesthesia. The CRNA prepares patients for sedation or anesthesia, gives anesthesia, monitors patients during procedures, and does other tasks to help the anesthesiologist.
Other specialists
Your child may also have other medical specialists, such as:
Pathologist: a doctor who helps diagnose disease by looking at tissue and cells under a microscope and doing other tests.
Pharmacist: prepares medicines and fills prescriptions. Pharmacists educate patients and caregivers on how to take medicines, possible side effects, and how to help manage symptoms.
Infectious diseases specialist: a doctor who works to prevent, diagnose, and treat infections.
Supportive care and clinical services
Your child may need care from other health professionals to help manage their blood disorder:
Registered dietitian: offers nutrition care and education for healthy eating habits, special diets, and nutrition therapies.
Emotional and social support
Your family may need help coping with issues related to your child’s illness. Care team members that may help with emotional and social support include:
Chaplain: provides support for religious, spiritual, and emotional needs.
Child life specialist: uses play, art, and other activities to help your child cope with illness. Child life specialists prepare patients for treatments and procedures using age-appropriate, child-friendly methods.
Psychologist: helps you and your child with emotional, behavioral, social, or learning concerns. Psychologists can provide testing, counseling, behavioral interventions, and stress or pain management.
Social worker: provides counseling and support. Social workers can also help you find resources to help with family education, financial concerns, and housing.
Other specialists on the care team
Your child may need extra support and care during treatment and recovery. These professionals can help with specific needs:
Fertility specialist: helps with reproductive health. Certain treatments may affect your child’s ability to have children in the future. A fertility specialist can help you understand risks and options to preserve fertility.
Genetic counselor: explains genetic test results and helps you understand inherited conditions.
Pain management specialist: assesses and treats pain. Pain management may include medicines or other ways to manage pain.
Other providers and staff members may help care for your child during their medical journey. These include different health care specialists, medical students and others completing training, and staff and volunteers who help support patients and their families.
Communicating with your care team
Your care team members are partners in your child’s care, and good communication is important. To help with communication:
Be honest and open with your care team members.
Ask questions. Write down your questions to help you remember.
Take notes and keep a record of medical information. This may include tests, treatments, medicines, and appointments.
Make a list of your care team members, what they do, and how to contact them.
Include your child in communication and planning when possible. Use words at the right level for their age and understanding. This helps build good relationships with the care team and gives your child a sense of control.
It is also important to have fair expectations:
Of yourself. This is a stressful time. Do not expect to understand or remember everything. Ask for help and use the resources that are available to help meet your needs.
Of your care team. They will not always have the answers. Often, decisions are not simple. A team of people can sometimes make communication harder to manage. But each person plays a role in caring for your child.
Key points about the pediatric hematology care team
The hematology care team is a team of experts who work to support the medical, emotional, and everyday needs of patients with blood disorders.
Your child’s care team members will depend on their specific needs.
Team members may change throughout your child’s care journey.
Your care team is your partner in your child’s medical journey, and open, honest communication is important.
Nurses are important members of a patient's care team and perform a variety of patient care tasks. Learn about types of nurses and their roles and functions.
