Abstract
In the US sickle cell disease (SCD) and its manifestations often result in a lifetime of pain and hospitalizations for the more than 75,000 individuals it affects. Many patients with SCD frequently report dissatisfaction with care. This dissatisfaction is often related to inadequate pain relief, which has a negative effect on quality of life. Few sickle cell disease specific interventions have been developed to improve self-care management in this vulnerable population. It is important to develop, understand, and test interventions aimed at enhancing self-care management among adults with SCD. The purpose of the proposed study is to learn more about vulnerability and self-care management in adults with SCD by testing aspects of a theoretical model. The Theory of Self-Care Management for Sickle Cell Disease will guide this study.
A cross-sectional survey design will be used to learn more about vulnerability and self-care management in adults with SCD by testing aspects of a theoretical model. The three primary study aims are: (1) determining the statistically significant indicators of vulnerability, (2) determining rather health-related or general assertiveness is the better self-care management resource for adults with SCD, and (3) determining if there are differences in vulnerability factors and self-care management factors between clinic-based and community-based adults with SCD. The secondary aim of the study is to determine the feasibility of collecting research data about adults with SCD via a community organization.
For this proposed pilot study, a sample of 60-90 adults with SCD will be recruited from a clinic and a community setting. Descriptive statistics will be calculated to describe the demographic characteristics of the sample. Study aims 1-2 will be addressed by testing a portion of the Theory of Self-Care Management for Sickle Cell Disease (Figure 1) using structural equation modeling (SEM) analytical techniques. Study aim 3 will be answered using t-tests to test for significant differences in vulnerability factors and self-care management resources between clinic-based and community-based adults with SCD. The secondary aim will be addressed by reviewing the data collection process and determining the feasibility of collecting research data about adults with SCD via a community organization. Data will be analyzed using SPSS and AMOS, a comprehensive model-fitting program.
The proposed project is directly related to self management as it will identify factors which affect self-care management in adults with SCD. Self-care management is defined as engaging in therapeutic behaviors and taking action to access resources to maintain and/or improve health status and quality of life. Therefore, the proposed project is closely linked to the mission of the Center for Self and Family Management of Vulnerable Populations. The long-term goal of this PI is to develop interventions to increase self-care management resources of adults with SCD. This project builds on the PI's previous research with adults with SCD and is a foundational step in understanding the influences on self-care management in adults with SCD, particularly vulnerability factors. Findings from this study will allow the PI to further revise the Theory of Self-Care Management and develop and test interventions for this vulnerable population.
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