Resources and Support
Child Life Services
Culturally-sensitive child life services are an integral part of comprehensive care. Child life services assure that care is family-centered and developmentally appropriate for the patient. It is imperative that patients with thalassemia understand their disease and treatment in order to follow their prescribed medical regiments. Child life programs in health-care settings minimize psychological trauma and promote optimal development of children and their families.
Through observation and discussion, assess the response of the patient and family to health-care experiences, and develop a plan to meet their needs and facilitate coping. Provide opportunities for gaining a sense of mastery, for play, for learning, for self-expression, for family involvement, and for peer interaction. This can be achieved in many ways, including medical play and art therapy.
Provide a positive growth experience for patients. Minimize stress and anxiety for the patient, parents, and siblings. Provide continual teaching to patients to help them understand all aspects of thalassemia, including blood type and transfusion, chelation, and general health and wellness.
Prepare children and families for health-care experiences. For example, conduct a medical preparation prior to a patient’s liver biopsy/SQUID and splenectomy. This increases overall understanding of the procedure, reduces anxiety, and enables patients to gain mastery over their health-care experiences.
During hospitalizations, provide essential life experiences such as play, school, peer interaction, community events. These activities commonly take place in the hospital playroom or schoolroom. Also create opportunities that strengthen self-esteem and independence.
Child life specialists are an integral part of the health-care team. They can work to empower patients and families, as well as teach them to be proactive members in their own health care. Child life can also assist