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

This study was conducted to assess hemophilia-related burden in partners an d to assess the impact of hemophilia on the partners' lives and on their we ll-being (i.e. satisfaction, self-esteem and health). The influence of pati ent and partner characteristics on these outcome variables was also assesse d. The study applies to 348 patients and their female partners. Six domains of burden (i.e, problem areas) were distinguished: consequences of hemophi lia, 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 charact eristics of patients, the following partner variables added to the predicti on of total burden: more caregiving tasks, less optimism, negative social i nteractions, insufficient information on virus infections and a high percei ved risk of AIDS. Hemophilia-related burden seemed to influence many aspect s of the partners' lives, in particular the relationship and family life. T he partners' satisfaction and health were directly influenced by the patien t's health, but there was no additional effect of the hemophilia-related bu rden or impact on the partners' well-being.