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

基本信息

批准号：
8102904
负责人：
Coretta M. Jenerette
金额：
$ 11.9万
依托单位：
UNIV OF NORTH CAROLINA CHAPEL HILL
依托单位国家：
美国
项目类别：
财政年份：
2009
资助国家：
美国
起止时间：
2009-09-01 至 2012-12-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8102904
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

项目摘要

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）：这份以患者为导向的研究职业发展奖（K23）申请描述了一个为期 3 年的计划，旨在帮助候选人为基于理论的自我护理管理策略领域的独立科学家职业生涯做好准备。患有镰状细胞病 (SCD) 的成人。国家护理研究所关注健康差异、健康促进和自我管理。拟议的指导培训将使申请人能够获得 SCD 病理生理学和疼痛方面的经验和额外指导，为成人 SCD 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进行试点研究，“提高提示识别和沟通技巧，减少与健康相关的耻辱并改善SCD的疼痛管理”，以获得这种自我护理功效的初步估计管理干预可提高线索识别和沟通技巧，并减少患有 SCD 的年轻人的耻辱感。干预结束后，将召开焦点小组会议，收集参与者对干预的反馈，以便更好地调整内容、时间和剂量，从而更全面地为患有 SCD 的成人制定文化敏感的自我护理管理干预措施。该干预措施基于申请人的镰状细胞病自我护理管理理论。申请人的指导团队均位于北卡罗来纳大学教堂山分校，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（二级导师）和血液学家/肿瘤学家 Kenneth Ataga 医学博士组成（二级导师）。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，拥有来自各种资源的专业知识，包括综合镰状细胞中心。这种环境将最大限度地发挥申请人作为独立研究者开发成功研究计划的潜力，旨在改善患有 SCD 的成人的自我护理管理。相关性：该项目将协助申请人培养设计和实施干预措施的技能，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 的成年人自助和更好地利用医疗保健系统的资源。