Chronic illness in children affects their entire lives and the lives of their families.

Parents are often concerned about how their child will adjust to school life, improve their attitudes, cope with the presence of any symptoms, and be able to develop self-management skills. They also fear the possibility of complications and inappropriate use of medications at school. In particular, parents of children with younger chronic illnesses have significant fears about potential emergencies that could occur while their children are in school.

But what are the issues and expectations of parents of children with chronic illnesses, such as haemophilia, with respect to school?

  • First, parents often perceive barriers at the intrapersonal level, such as a lack of knowledge and awareness among school staff. This lack of knowledge is a barrier to chronic disease management.
  • Parents of children with chronic illnesses also report the importance of establishing precise emergency response procedures.
  • Parents also expect schools to strengthen and support children’s self-management.
  • Parents would like their children to experience school life in an ordinary way, without discrimination. Facilitating normalcy for children requires careful prevention and monitoring of complications, rather than sending children home if they have a chronic health-related event.



  • Ju-Yeon Uhm and Mi-Young Choi, Barriers to and Facilitators of School Health Care for Students with Chronic Disease as Perceived by Their Parents: A Mixed Systematic Review, Healthcare (Basel). 2020 Nov 21;8(4):506. doi: 10.3390/healthcare8040506.
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Learn more about the meaning of the words you read on this page and learn about the entire glossary on hemophilia.

Active involvement of the patient in the management of his/her health programme.

A ereditary genetic illness, characterised by a deficiency of clotting factor VIII, that exposes the individual to a greater risk of both internal and external bleeds.

Haemophilia A is more common in males, whereas females tend to be healthy carriers of the condition.

The typical symptoms of the condition include haemarthroses (joint bleeds) and haematomas (muscle bleeds).

Condition that occurs when factor VIII activity is between 1% and 5%.

Condition that occurs when factor VIII activity is between 1% and 5%.

Condition that occurs when factor VIII activity is <1%.