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

## TL;DR

This study explores how caregivers and healthcare providers perceive information about haemophilia in children and identifies needs for better, centralized resources.

## Contribution

The study provides new insights into the gaps in information provision for haemophilia and proposes a digital platform as a solution.

## Key findings

- Current information provision about haemophilia is fragmented and incomplete.
- Caregivers and healthcare providers emphasize the need for standardized, centralized, and tailored information.
- Digital platforms with visual support are suggested to improve information accessibility and reliability.

## Abstract

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.

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).

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 comprehensive thematic content analysis was subsequently conducted using several phases of coding.

Three main themes were identified. First, caregivers and HCPs indicated that current disease knowledge and information provision regarding haemophilia varies and could be improved. Both groups underlined the importance of adequate information provision to support decision‐making and alleviate anxiety. Second, the need for standardized, centralized and tailored information was expressed, preferably digital. Current information is experienced as fragmented and incomplete, leading to lack of structure and uncertainties. Lastly, information provision cannot exist without additional coaching by the multidisciplinary treatment team and peers.

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.