Raising a child with a genetic bleeding disorder is a significant challenge that impacts the entire family. The PEP program was designed to address this need by affirming positive parent/child behaviors while focusing on the unique problems faced by parents of children with bleeding disorders.
The PEP program is designed to enhance the therapeutic relationship between parent, child and treatment staff; increase the parents’ understanding of the child’s bleeding disorder; heighten the parents’ ability to respond objectively and consistently to bleeding episodes; and provide the parent with the skills necessary to effectively parent the child at the earliest age possible.
The programme addresses many important issues, including the impact of bleeding disorders on child development; understanding and dealing with frustrations, anger and other feelings; compassionate discipline; child management skills; building self-esteem and confidence; parenting styles; and parent/family communication.
It was very helpful from a parenting perspective to learn of techniques to raise a balanced child with a healthy self-esteem. On top of that, it was fantastic to discuss key issues like raising a child who is thought of as more fragile than other children. After attending this course I feel equipped to help my son grow up as a normal little boy with increased confidence, understanding and knowledge.
Nerissa Roberts
It's so important to find the balance of letting your child develop as normal as possible, while still trying to keep him safe. The realisation that we need to give our children increasing responsibility with regards to their own treatment as they grow older, was another concept that I have never thought about.
Julie Malan
It was a great idea to have the mothers at the PEP Workshop. This gives us nurses a better understanding of the home situation and we are able to share our knowledge and experience with new parents.
