Parental Response to Illness
As with the diagnosis of other chronic illnesses, a diagnosis of hemophilia means that parents must deal with the loss of their hopes for the “perfect” child. Support should be provided to parents, thereby assisting them in their efforts to resolve their feelings of loss. This will help facilitate their acceptance of the diagnosis and adjust their expectations and lifestyle to adapt and care for their son. Many families progress through a series of stages in coping with such a diagnosis.
Parents often react initially with shock, disbelief, or denial. Acceptance of the diagnosis follows and many parents, especially mothers, feel guilt at having “given” this disorder to their baby. Parents are sometimes confused and frightened for their child and can experience feelings of helplessness. They often worry about
- The child’s future
- The child’s development over the lifespan
These are all normal responses, unless they are excessive or prolonged. Parents might need support to recognize that individuals cope differently and that this, too, is normal. One parent might acknowledge the diagnosis and feel guilty about it, while the other might continue to be in denial. Many parents typically feel isolated by these feelings. It is helpful to acknowledge the “normality” of all such reactions. Ongoing education can help to bridge gaps in parental knowledge. Counseling and guidance, either individually or in groups, can help parents during this time.
These resources can be helpful in providing support to patients and their families.
- Local chapters of the National Hemophilia Foundation (NHF)
- Basic Concepts Guide of Hemophilia Care for New Families (2001). Available from the NHF by telephoning 1-80042HANDI
- NHF literature. Available from the NHF website at hemophilia.org
- The Hemophilia Handbook. Published by and available from Hemophilia of Georgia by telephoning 770-518-8272
- Inside a Bleeding Joint (video, undated). Available through the Bayer Corporation, Pharmaceutical Division, PO Box 1000 Montville, NJ 07045-1000 or telephoning 973-487-2000