Decreasing Health-Related Stigma in Adults with Sickle Cell Disease

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DESCRIPTION (provided by applicant): This Mentored Patient-Oriented Research Career Development Award (K23) application describes a 3-year plan to prepare the candidate for a career as an independent scientist in the area of theory-based self-care management strategies for adults with sickle cell disease (SCD). The National Institute of Nursing Research is concerned with health disparities, health promotion, and self-management. The proposed mentored training will allow the applicant to gain experience and additional instruction in the pathophysiology and pain of SCD, developing and delivering theory-based interventions for adults with SCD, and longitudinal clinical trial methods and data analysis. These short-term goals will be achieved through the integration of courses and mentored experiences guided by an interdisciplinary team of experts at the University of North Carolina at Chapel Hill (UNC-Chapel Hill). Additionally, the applicant will use a randomized repeated measures design to conduct a pilot study, "Improving Cue Recognition and Communication Skills to Reduce Health-Related Stigma and Improve Pain Management in SCD," to obtain preliminary estimates of the efficacy of this self-care management intervention at improving cue recognition and communication skills and decreasing perceived stigma for young adults with SCD. After the intervention, a focus group will be convened to obtain feedback from participants about the intervention in order to better tailor content, timing, and dose to more fully develop a culturally sensitive self-care management intervention for adults with SCD. The intervention is based on the applicant's Theory of Self-Care Management for Sickle Cell Disease. The applicant's mentoring team, all located at UNC-Chapel Hill, will consist of nurse scientist Merle Mishel, PhD, RN, FAAN (primary mentor), clinical psychologist Karen Gil, PhD (secondary mentor), and hematologist/oncologist Kenneth Ataga, MD (secondary mentor). UNC-Chapel Hill provides an ideal setting for the candidate's development, with expertise from diverse resources, including a comprehensive sickle cell center. This environment will maximize the potential of the applicant to develop a successful program of research as an independent investigator aimed at improving self-care management in adults with SCD. RELEVANCE: The project will assist the applicant to develop skills to design and deliver interventions to help adults with SCD improve their health and quality of life with self-care strategies. The interventions will increase the resources adults with SCD have to help themselves and better use the healthcare system.