Decreasing Health-Related Stigma in Adults with Sickle Cell Disease

描述(由申请者提供)：这项以患者为导向的研究职业发展奖(K23)申请书描述了一项为期3年的计划，旨在为候选人作为一名独立科学家在成人镰状细胞病(SCD)理论自我护理管理策略领域的职业生涯做准备。国家护理研究所关注健康差距、健康促进和自我管理。拟议的指导培训将使申请者获得SCD病理生理学和疼痛方面的经验和额外指导，为SCD成人开发和提供基于理论的干预措施，以及纵向临床试验方法和数据分析。这些短期目标将通过在北卡罗来纳大学教堂山分校(北卡罗来纳大学-教堂山分校)一个跨学科专家小组的指导下整合课程和指导经验来实现。此外，申请者将使用随机重复测量设计进行一项试点研究，名为“提高线索识别和沟通技能，以减少SCD中与健康相关的耻辱和改善疼痛管理”，以获得对这种自我护理管理干预在改善SCD年轻成年人的线索识别和沟通技能和减少可感知的耻辱方面的有效性的初步估计。干预结束后，将召集一个焦点小组，以获得参与者对干预的反馈，以便更好地调整内容、时机和剂量，以便更充分地为患有SCD的成年人制定具有文化敏感性的自我护理管理干预。该干预是基于申请者的镰状细胞病自我护理管理理论。申请者的指导团队全部位于北卡罗来纳大学教堂山分校，将由护士科学家Merle Mishel，PhD，RN，FAAN(主要导师)，临床心理学家Karen Gil，博士(二级导师)和血液学家/肿瘤学家Kenneth Ataga，MD(二级导师)组成。北卡罗来纳大学教堂山分校为候选人的发展提供了理想的环境，拥有来自不同资源的专业知识，包括一个全面的镰状细胞中心。这种环境将最大限度地发挥申请者作为独立调查者制定一项成功的研究计划的潜力，旨在改善患有SCD的成年人的自我护理管理。相关性：该项目将帮助申请者发展设计和提供干预措施的技能，以帮助患有SCD的成年人通过自我护理战略改善他们的健康和生活质量。这些干预措施将增加患有SCD的成年人必须自助并更好地利用医疗系统的资源。

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.