Assessing the supportive care needs of parents with a child with a bleeding disorder using the Parental Needs Scale for Rare Diseases (PNS-RD): A single-centre pilot study.

Overall, parents are confident about dealing with their child's bleeding disorder and are satisfied with the level of support and care that they and their child are receiving. The emotional and psychological impacts of having a child with a bleeding disorder remain a significant burden for many parents. The financial costs associated with caring for their child further impact on their ability to cope. Regular assessment of parental support needs should be part of routine clinical care.