Decreasing Health-Related Stigma in Adults with Sickle Cell Disease

减少镰状细胞病成人患者与健康相关的耻辱感

• 批准号: 7923314
• 负责人: Coretta M. Jenerette
• 金额: $ 12.12万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-01 至 2012-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7923314
• 关键词: Accident and Emergency department; Ache; Acute; Address; Adult; Advocacy; African American; Analgesics; Area; Assertiveness; Calculi; Clinical; Clinical Trials; Communication; Control Groups; Cues; Data; Data Analyses; Development; Discrimination; Disease; Doctor of Philosophy; Dose; Early treatment; Educational process of instructing; Environment; Exercise; Feedback; Feeling; Focus Groups; Functional disorder; Goals; Health; Health Personnel; Health Professional; Health Promotion; Health Services; Healthcare Systems; Hematologist; Individual; Instruction; Intervention; Intervention Studies; Label; Link; Measures; Mental Depression; Mentored Patient-Oriented Research Career Development Award; Mentors; Methods; Narcotics; National Institute of Nursing Research; North Carolina; Nurses; Oncologist; Pain; Pain management; Participant; Patients; Persons; Pharmaceutical Preparations; Phase; Pilot Projects; Prevention; Principal Investigator; Provider; Psychologist; Quality of life; Randomized; Reporting; Research; Research Personnel; Resources; Scientist; Self Care; Self Management; Sickle Cell; Sickle Cell Anemia; Social isolation; Stereotyping; Stigmata; Stigmatization; Symptoms; Testing; Time; Training; Translating; Universities; Yang; base; care seeking; career; design; diaries; drug seeking behavior; emotional reaction; experience; health disparity; improved; programs; response; routine care; satisfaction; sickle cell crisis; skills; social stigma; theories; young adult

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.

描述（由申请人提供）：这个指导以患者为导向的研究职业发展奖（K23）应用程序描述了一个3年计划，以准备候选人的职业生涯作为一个独立的科学家在理论为基础的自我护理管理策略的领域为成人镰状细胞病（SCD）。国家护理研究所关注的是健康差距，健康促进和自我管理。拟议的指导培训将使申请人获得经验和额外的指导，在SCD的病理生理学和疼痛，开发和提供基于理论的干预措施，为成人SCD，纵向临床试验方法和数据分析。这些短期目标将通过在查佩尔山的北卡罗来纳州大学（UNC-查佩尔山）的一个跨学科专家小组的指导下，整合课程和辅导经验来实现。此外，申请方将使用随机重复测量设计进行一项试点研究，“改善提示识别和沟通技能，以减少SCD患者的健康相关污名并改善疼痛管理”，以获得这种自我护理管理干预措施在改善提示识别和沟通技能以及减少SCD年轻人感知污名方面的疗效的初步估计。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，更充分地为成人SCD制定文化敏感的自我护理管理干预措施。该干预措施是基于申请人的镰状细胞病自我护理管理理论。申请人的指导团队，所有位于北卡罗来纳大学教堂山，将包括护士科学家梅尔米舍尔，博士，RN，FAAN（主要导师），临床心理学家卡伦吉尔，博士（次要导师），和血液学家/肿瘤学家肯尼斯阿塔加，医学博士（次要导师）。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，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人的潜力，作为一名独立的研究者，开发一个成功的研究项目，旨在改善成人SCD的自我护理管理。相关性：该项目将帮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健康和生活质量。这些干预措施将增加患有SCD的成年人的资源，以帮助自己并更好地利用医疗保健系统。