Referral to a family and child services agency or other community mental health facility can be helpful in this situation. With specialized individual, family, and group counseling, parents together or individually are usually able to work through social, emotional, and environmental conflicts. Often, parental understanding and comprehension of the genetic implications of their child's medical condition remain inadequate. If so, ongoing association with genetic counseling services should be considered. Established programs in the community that provide services to patients and families affected by sickle cell disease or other genetic disorders should be used.
Parents can also benefit from interacting with other parents in mutual support and self-help groups.
Parents should notify appropriate school officials of their child's condition. It is helpful to have written information that can be shared with the teacher, school nurse, and other school officials. This information can be in the form of a brochure or pamphlet containing general information about sickle cell disease or a letter from the patient's physician specifically describing the child's condition and any special needs. Medical or nursing staff should be available to provide consultation and education to teachers about sickle cell disease. The physician should consider these requests carefully, discuss them fully with the parents and others involved, and understand completely the nature of the request.