Talking about your child's diagnosis can be difficult. Caregivers may want to start talking to the child about their diagnosis as soon as possible and provide information appropriate for the child’s developmental level to help them accept and understand their diagnosis.
When it comes to sharing the diagnosis, patients and families should decide whom and when to tell about their bleeding disorder.
However, adults who may be responsible for the patient need to be informed about the patient’s bleeding disorder (e.g., teacher, babysitter, coach, camp counselor)
The Children’s Hospital Los Angeles Hemostasis and Thrombosis Center offers suggestions on:
What to Tell School Staff:
- Meet with school staff, including teacher, aide(s), principal, school nurse, other relevant school personnel
- Know the facts and be prepared to answer common questions and/or correct misinformation
- Consider possible reactions and how you may respond
- It may be helpful to plan and rehearse your explanation in advance
- Do not assume that school nurse or other school staff is well-versed in hemophilia or other bleeding disorder care
- Explain the basics of the bleeding disorder and how it affects your child (e.g., common sites of bleeding, signs or symptoms of a bleed, treatment, when to go to the emergency room)
- Discuss the importance of exercise for healthy joints, as well as safe activities and proper protective equipment
- Inform school staff that you will notify them if your child needs to avoid physical activities for any period of time
- Giving teachers and staff pamphlets and fact sheets may be helpful in providing accurate information and correcting misinformation
- Provide list of individuals and phone numbers to contact in case of an emergency
- Request that school staff not announce the patient’s diagnosis to her or his class
- It is important to let the patient decide what, when and to whome they wish to disclose their medical information.
- If the child self-infuses or you would like to infuse at school, request to store factor concentrate and infusion equipment in nurse’s office to be used in the event of a bleed
- Instruct school staff not to provide aspirin for pain relief if child has a bleed. Supply the nurse with acetaminophen or other appropriate pain medicine if needed during school hours.
- Request a letter from Children’s Hospital Hemostasis and Thrombosis Center for school staff, explaining diagnosis, recommendations or request school consultation
- Offer school staff the opportunity to speak to our staff
What to Tell Other Adults Who May be Responsible for the Child:
- Know the facts and be prepared to answer common questions and/or correct misinformation
- Consider possible reactions and how you may respond
- It may be helpful to plan and rehearse your explanation in advance
- Allow enough time for you to speak openly and without interruption
- Follow-up conversations are helpful to answer additional questions and/or concerns
- Explain the basics of the bleeding disorder and how it affects your child (e.g., common sites of bleeding, signs or symptoms of a bleed, treatment, when to go to the emergency room)
- Sharing pamphlets and fact sheets helpful in providing accurate information and correcting misinformation
- Provide list of individuals and phone numbers to contact in the event of an emergency
- Instruct the person not to provide aspirin for pain relief if child has a bleed. Supply them with acetaminophen or other appropriate pain medicine, if needed
- Contact the Children’s Hospital Los Angeles Hemostasis and Thrombosis staff for additional recommendations or request a consultation
How to Tell Friends:
- It is a child's choice as to what they wish to tell their friends
- Know the facts and be prepared to answer common questions (e.g., “Is it contagious?,” “Can you play like everyone else?”)
- Keep it simple - you don’t have to tell them specific details
- Consult with parents or the Children’s Hospital Los Angeles Hemostasis and Thrombosis Center staff of concerns about telling friends or have questions about how share the information
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