Decreasing Health-Related Stigma in Adults with Sickle Cell Disease

描述（由申请人提供）：这个指导病人导向的研究职业发展奖（K23）申请描述了一个3年的计划，为候选人在成人镰状细胞病（SCD）的基于理论的自我保健管理策略领域的独立科学家做好准备。国家护理研究所关注健康差异、健康促进和自我管理。建议的指导培训将使申请人在SCD的病理生理学和疼痛方面获得经验和额外的指导，为成人SCD患者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北卡罗来纳大学教堂山分校（UNC-Chapel Hill）跨学科专家团队指导的课程和指导经验的整合来实现。此外，申请人将使用随机重复测量设计来进行一项试点研究，“提高线索识别和沟通技巧以减少与健康相关的耻辱感和改善SCD的疼痛管理”，以初步估计这种自我保健管理干预在提高线索识别和沟通技巧以及减少年轻SCD患者感知的耻辱感方面的效果。干预后，将召集一个焦点小组，以获得参与者对干预的反馈，以便更好地定制内容，时间和剂量，以更充分地为成人SCD患者制定文化敏感的自我保健管理干预。干预是基于申请人的镰状细胞病自我保健管理理论。申请人的指导团队都位于北卡罗来纳大学教堂山分校，将由护士科学家Merle Mishel博士，注册护士，FAAN（主要导师），临床心理学家Karen Gil博士（次要导师）和血液学家/肿瘤学家Kenneth Ataga医学博士（次要导师）组成。北卡罗来纳大学教堂山分校为候选人的发展提供了一个理想的环境，与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人的潜力，发展一个成功的研究项目，作为一个独立的研究者，旨在提高成人SCD患者的自我保健管理。相关性：该项目将协助申请人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策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的成年人帮助自己和更好地利用医疗保健系统的资源。

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.