Recently published report courtesy of Rare Disease UK.
This report is the result of a project that, through imaginative and creative techniques, provided children and young people the opportunity to share their stories, in their own words. This gives us a valuable glimpse into their rare disease experience, as they see it.
The report highlights a number of key findings:
Children affected by rare disease are adaptive, resilient and do not see their rare disease as a fundamental part of their identity.
There are aspects of their care children think could be improved.
The people that care for children, both at hospital and at home, play an important role in shaping children’s experience of living with a rare disease.
Children’s needs and challenges change as they get older, meaning the experience of young people is often very different to that of children.
Siblings understand a great deal about their brother or sister’s care and develop skills in empathy and compassion, despite facing challenges.
The full report is available at http://www.raredisease.org.uk/media/3348/understanding-children-and-young-peoples-experiences-website.pdf