APPLICATION OF A CULTURALLY RELEVANT HEALTH BELIEF MODEL TO BLACK AND AFRICAN AMERICAN YOUNG ADULTS WITH SICKLE CELL DISEASE DURING TRANSITION TO ADULT HEALTHCARE SERVICES

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2022

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Abstract

Sickle cell disease (SCD) is a hereditary chronic illness hallmarked by pain and functional disability that impacts psychosocial well-being. Within the United States, SCD largely affects Black and African American populations, and general health disparities present in these populations may be further magnified by SCD. Due to the complexity of symptom management, consistent healthcare adherence is imperative and is often scaffolded by family caregivers prior to transition. The transition from the pediatric to adult healthcare facility is a life stage public health concern for young adults with SCD, as it is a time characterized by high mortality and morbidity. Navigating new medical systems and working with new providers are factors contributing to delays in treatment-seeking behavior. Unexplored factors that may impact illness course and outcomes include health-related stigma, racial discrimination, and preparation for bias. This research assessed whether the perceived barriers (e.g., racial discrimination, externalized stigma, and internalized stigma) are linked to SCD-specific self-efficacy and transitioning to the adult healthcare setting, utilizing an adapted Health Belief Model. It additionally explored whether a culturally relevant factor, preparation for bias, contributes to transition readiness. Questionnaires were administered to young adults with SCD who were preparing for transition or actively transitioning to an adult healthcare facility. This work was a first step at exploring the relationships between these variables utilizing a culturally relevant Health Belief Model. Strong positive significant correlations among perceived barrier variables were noted as well as a positive significant correlation between SCD-specific self-efficacy and transition readiness. Results from multivariate models suggest that externalized stigma was significantly positively related to SCD-specific self-efficacy. Counter to expectations, no significant predictors of transition readiness were identified. Additionally, results did not support preparation for bias moderating the relationships between racial discrimination or externalized stigma with SCD-specific self-efficacy or transition readiness. These findings may highlight that our study was underpowered to detect large effects, or that there are additional complex relationships that need to be further explored. A short-term goal of this study was to highlight the value of identifying youth with low self-efficacy or preparation for bias in order to guide educational resources and interventions to increase self-efficacy and readiness to transition for this underserved illness group.

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