The World Health Organization defines “empowerment” as a process by which people gain greater control over decisions and actions that affect their health.
In haemophilia, as in other chronic diseases, patient empowerment is essential and, as such, must be developed. It is an important factor in ensuring the self-determination and autonomy of people with haemophilia. However, there can be no accountability if there is no proper information first.
A recent study has reported that most haemophilic patients (nearly 70%), especially those on primary prophylaxis or inhibitors, feel empowered to make decisions about issues that affect their health.
In contrast, it was found that patients whose disease is more controlled (mild haemophilia) have less knowledge. Because these patients experience fewer bleeding episodes, what they know about the topic is reduced as a result of their personal experience.
Collaboration with patient organisations is helpful in encouraging people with haemophilia to develop self-management skills for the condition from an early age. A comprehensive approach, which promotes information and listening, allows healthcare providers and patients to share their concerns and discuss treatment goals. This process allows patients to learn from personal experience, interactions with their doctors and nurses, their parents, and other family members with haemophilia.
Reference:
- Hortensia De la Corte-Rodriguez, E. Carlos Rodriguez-Merchan, Teresa Alvarez-Roman, Monica Martin-Salces, Sara Garcia-Barcenilla & Victor Jimenez-Yuste (2019): Health education and empowerment in adult patients with haemophilia, Expert Review of Hematology, DOI: 10.1080/17474086.2019.1650640
