Linda Myrin Westesson

Abstract Introduction Von Willebrand disease (VWD) is the most widespread congenital bleeding disorder. Caregivers are highly involved in its treatment, and from the time of the child's bleeding diagnosis, they face new demands such as recognition of bleeds and treatment options. Aim The aim of this study was to assess Health related quality of life (HRQoL) in caregivers of children with moderate and severe VWD in Sweden, and to describe the impact of psychosocial aspects on the burden.

Aims and objectives To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this. Background Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents. Design A multicentre, cross‐sectional study.

ORIGINAL ARTICLE Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition Linda Myrin Westesson PhD Corresponding Author Haemophilia Nurse E-mail address: myrinwestesson@gmail.com https://orcid.org/0000-0002-9613-8084 Sahlgrenska University Hospital, Gothenburg, Sweden Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden Correspondence Linda Myrin Westesson, Coagulation Centre,...