Hemophilia from the partners' perspective: Burden and impact on their lives

Abstract

This study was conducted to assess hemophilia-related burden in partners and to assess the impact of hemophilia on the partners' lives and on their well-being (i.e. satisfaction, self-esteem and health). The influence of patient and partner characteristics on these outcome variables was also assessed. The study applies to 348 patients and their female partners. Six domains of burden (i.e. problem areas) were distinguished: consequences of hemophilia, social response, virus infections, dependency, coping of patients, and heredity. Most burdening aspects to partners were 'pain in patients' and 'the risk of virus infections due to treatment'. Apart from physical characteristics of patients, the following partner variables added to the prediction of total burden: more caregiving tasks, less optimism, negative social interactions, insufficient information on virus infections and a high perceived risk of AIDS. Hemophilia-related burden seemed to influence many aspects of the partners' lives, in particular the relationship and family life. The partners' satisfaction and health were directly influenced by the patient's health, but there was no additional effect of the hemophilia-related burden or impact on the partners' well-being.