biostudies-literatureMussert CMANational Research Agenda (NWA)Stichting HaemophiliaSYMPHONY consortiumNetherlands Organization from Scientific Research (NWO)Dutch Research Council (NWO)Routes of Consortia (ORC)657-667https://www.ebi.ac.uk/biostudies/studies/S-EPMC12306852biostudies-literatureUnknown31(4)<h4>Introduction</h4>In haemophilia, ever more effective treatment options leading to minimal bleeding make information provision about the disease and its symptoms and when to alert the treatment team increasingly important. However, little is known about how current information provision is perceived and what the needs are.<h4>Aim</h4>Gain in-depth insights into experiences and needs regarding information provision of caregivers of young children with haemophilia, and the perspectives of their healthcare providers (HCPs).<h4>Methods</h4>A qualitative study was conducted including 15 semi-structured interviews with caregivers and seven interviews with HCPs. Purposive sampling ensured a varied sample regarding the child's age, type and severity of haemophilia, and treatment strategy. A comHaemophilia : the official journal of the World Federation of HemophiliaExperiences and Needs Regarding Information Provision in Children With Haemophilia: A Qualitative Study on Caregivers' and Healthcare Providers' Perspectives.PMC12306852NWA.1160.18.038van der Velden-van 't Hoff CCnossen MHDehli SRDiekstra AAlbayrak AReitsma SHSYMPHONY consortiumvan Hoorn ESNooteboom ACMEekelaar TMAndeweg SMussert CMAKamminga NCWfalseExperiences and Needs Regarding Information Provision in Children With Haemophilia: A Qualitative Study on Caregivers' and Healthcare Providers' Perspectives.<h4>Introduction</h4>In haemophilia, ever more effective treatment options leading to minimal bleeding make information provision about the disease and its symptoms and when to alert the treatment team increasingly important. However, little is known about how current information provision is perceived and what the needs are.<h4>Aim</h4>Gain in-depth insights into experiences and needs regarding information provision of caregivers of young children with haemophilia, and the perspectives of their healthcare providers (HCPs).<h4>Methods</h4>A qualitative study was conducted including 15 semi-structured interviews with caregivers and seven interviews with HCPs. Purposive sampling ensured a varied sample regarding the child's age, type and severity of haemophilia, and treatment strategy. A com2025-01-01T00:00:00Z2025 Jul2026-03-31T11:15:36.767Z2025-08-30T03:06:58.386ZS-EPMC123068524038708510.1111/hae.70063