Experiences and Needs Regarding Information Provision in Children With Haemophilia: A Qualitative Study on Caregivers’ and Healthcare Providers’ Perspectives
Both caregivers and HCPs experience unmet needs regarding information provision as currently performed. Empowerment can be provided by standardized, centralized information tailored to disease severity and phase of life. A digital information platform with visual support, could provide a complete, up-to-date, readily available and reliable resource.
Authors
- Simone H. Reitsma (ORCID: https://orcid.org/0000-0003-4386-5728)
- Evelien S. van Hoorn (ORCID: https://orcid.org/0000-0001-9661-2746)
- Marjon H. Cnossen (ORCID: https://orcid.org/0000-0003-1557-2995)
- Armaĝan Albayrak (ORCID: https://orcid.org/0000-0001-5801-3670)
- Adinda Diekstra
- Nadia Christina Willemina Kamminga (ORCID: https://orcid.org/0000-0002-8386-2540)
- Sasja Andeweg
- Caroline Mussert (ORCID: https://orcid.org/0009-0009-8970-9473)
- Charles Hoff
- Tjaisha M. Eekelaar
- Silje R. Dehli
- Annebelle C. M. Nooteboom
Institutions
- Dutch Cancer Society (NL)
- Erasmus MC (NL)
- Erasmus MC - Sophia Children’s Hospital (NL)
- Erasmus MC Cancer Institute (NL)
- Delft University of Technology (NL)
Publication Details
- Journal
- Haemophilia
- Published
- 2025-05-19
- DOI
- https://doi.org/10.1111/hae.70063
- Primary Topic
- Hemophilia Treatment and Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Nederlandse Organisatie voor Wetenschappelijk Onderzoek
- Stichting Haemophilia