Patient and Public Involvement and Engagement in Research With Children and Young People With Sickle Cell Disorder and Their Families

Workshops with participants to develop resources that enable children and young people with sickle cell disorder and their families to engage in research

Aim: To co-produce resources for inclusive and equitable Patient and Public Involvement and
 Engagement in research on life-limiting conditions, with children and young people with
 sickle cell disorder and their families.
 
 Methods: Workshops with a) members of a patient advocacy organisation (Sickle Cell Society
 n=5) b): i) Children and young people (10-18 years) with sickle cell disorder (n=15) and ii)
 their siblings (10-18 years, n=10) and iii) their parents (n=15), c) Researchers form the
 Cicely Saunders Institute Outputs: Resources that enable children and young people with
 sickle cell disorder and their families to engage in research