| Summary: | An individual who is diagnosed with an inherited bleeding disorder is expected to manage his or her condition on a daily basis. This chronic situation can totally disrupt psychosocial functioning and make it more difficult to adjust to the illness. Other researchers have studied this phenomenon in various other chronic illnesses; however, not in individuals with inherited bleeding disorders (Akkasilpa, et al, 2000, Pollack, 1989a, 1989b). Psychosocial problems are not restricted to individuals with one chronic illness and clinically, it is noted that some individuals adjust to chronic diseases better than others. Individuals living with inherited bleeding disorders may also have other chronic illnesses such as hypertension, asthma, diabetes mellitus (DM), congestive heart failure (CHF), arthritis, and hepatitis A, B, C and/or HN. The aims of this study are to describe health stressors, health related hardiness, perception of illness impact, self perception of health status and psychosocial adjustment to illness in individuals living with an inherited bleeding disorder; to determine relationships between demographic and illness variables, health stressors, health related hardiness, perception of illness impact, self perception of health status and psychosocial adjustment to illness; and to determine if perception of illness impact has a direct and/or mediating effect on the relationship between health stressors, health related hardiness, and self-perception ofhealth status and psychosocial adjustment to illness. A cross sectional survey design was used in this study. Sixty individuals of predominantly Asian Pacific Islander ethnicity diagnosed with hemophilia, von Willebrand's Disease, Factor V or as hemophilia carriers comprised the sample which was drawn from the Hemophilia Treatment Center of Hawaii. All participants were asked to complete five questionnaires: Demographic form and illness information, health related hardiness scale (Pollock, 1990), perception of illness impact scale, self-perception of health status and psychosocial adjustment to illness scale (Derogatis, 1990). Higher health stressors were
associated with higher perception of illness impact, lower perception of health status and poorer psychosocial adjustment to illness. Individuals with higher hardiness were better adjusted to their illness. Higher perception of illness impact was associated with lower self-perception of health status and poorer psychosocial adjustment to illness. Higher self-perception of health status was associated with better psychosocial adjustment to illness. Perception of illness impact did mediate the relationship between health related hardiness and psychosocial adjustment to illness. Perception of illness impact did not mediate the relationship between health stressors and psychosocial adjustment to illness, between health stressors and self-perception of health status, and between health related hardiness and self-perception of health status. The knowledge generated from this study has the potential to impact the existing practices in improving evidence-based nursing practice in caring for individuals with inherited bleeding disorders. Future research is indicated with a large sample to determine differences between diagnosed individuals and carriers, between various Asian Pacific Islander cultural groups, and to determine replicability of the findings from this smaller study sample.
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