Experiences and Needs Regarding Information Provision in Children With Haemophilia: A Qualitative Study on Caregivers' and Healthcare Providers' Perspectives.

ABSTRACT:

Introduction

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.

Aim

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).

Methods

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 com

SUBMITTER: Mussert CMA 

PROVIDER: S-EPMC12306852 | biostudies-literature | 2025 Jul

REPOSITORIES: biostudies-literature