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Improving Healthcare for Individuals and Families Living with Sickle Cell Disease

改善镰状细胞病患者和家庭的医疗保健

基本信息

批准号：
8701674
负责人：
Coretta M. Jenerette
金额：
$ 4.82万
依托单位：
DUKE UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2014
资助国家：
美国
起止时间：
2014-04-17 至 2015-03-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8701674
关键词：
Accident and Emergency department Address Adolescent Adult Affect Americas Attitude Awareness Caring Child Child Care Childhood Chronic Disease Collaborations Communication Communities Complex Disease Disease Association Education Educational Curriculum Educational workshop Faculty Family Family member Functional disorder Funding Genetic Goals Grant Health Health Personnel Health system Healthcare Hospital Departments Hospitals Individual Knowledge Learning Life Life Expectancy Life Experience Longevity Marketing Measures Medical Modeling Morality Morbidity - disease rate North Carolina Nurses Nursing Education Nursing Students Opioid Pain management Participant Patients Perception Persons Physicians Primary Health Care Provider Qualifying Quality of Care Quality of life Recruitment Activity Research School Nursing Self Care Sickle Cell Sickle Cell Anemia Social Workers Support Groups Surveys Symptoms Training Training and Education Universities base experience forest improved member novel programs psychosocial public health relevance skills symposium

项目摘要

DESCRIPTION (provided by applicant): The overall objective of the proposed small conference is to improve the healthcare experience of individuals with SCD in North Carolina. A second objective is to improve the health and quality of life of persons living with SCD in North Carolina. A final objective is to increase the number of nurses trained as sickle cell experts in North Carolina. The proposed two-day conference will target nurses (primary target), nursing students, and families with SCD, and provide comprehensive knowledge of the complexity of sickle cell disease (SCD) in children and adults. The conference proposes a new model in which to deliver education by delivering education to nurses, patients and families living with SCD, in the same educational venue. The conference will also increase the capacity to train nurses beyond those that attend the conference by increasing the number of nurses trained as SCD Champions, a novel component of the proposed conference. A two day conference will be offered at the Duke University School of Nursing (DUSON), each day with a different focus. The conference will cover a broad range of topics related to SCD including genetics, pathophysiology, medical, and psychosocial complications of sickle cell disease in children and adults. Day one will focus on the care of the adult and day two will focus on the care of the child and adolescent with SCD, and provide specific education to patients and families living with SCD. In addition to marketing to nurses and nursing students, we will specifically market Day 2 of the conference to the community and encourage attendance by individuals with SCD, and family members of children with SCD. By providing both core and breakout sessions on both days, we will be able to address educational needs of providers, patients, and families. Our goal is to include an opportunity for interaction and communication among healthcare providers and individuals and families experiencing SCD. Finally, we will measure healthcare provider attitudes towards persons with SCD, and their knowledge of SCD prior to the conference, at the end of the conference and following the conference.

描述（由申请人提供）：拟议小型会议的总体目标是改善北卡罗来纳州SCD患者的医疗保健体验。第二个目标是改善北卡罗来纳州SCD患者的健康和生活质量。最后一个目标是增加北卡罗来纳州接受镰状细胞专家培训的护士人数。拟议的为期两天的会议将针对护士（主要目标），护理学生和SCD家庭，并提供儿童和成人镰状细胞病（SCD）复杂性的全面知识。会议提出了一种新的模式，通过在同一教育场所向护士、患者和SCD患者家庭提供教育来提供教育。会议还将通过增加被培训为SCD冠军的护士人数，提高培训护士的能力，这是拟议会议的一个新组成部分。为期两天的会议将在杜克大学护理学院（杜松）举行，每天都有不同的重点。会议将涵盖与SCD相关的广泛主题，包括儿童和成人镰状细胞病的遗传学，病理生理学，医学和心理社会并发症。第一天的重点是照顾成年人，第二天的重点是照顾孩子。和青少年SCD患者，并为SCD患者和家庭提供有针对性的教育。除了向护士和护理专业学生进行营销外，我们还将特别向社区推广会议的第二天，并鼓励患有SCD的个人和患有SCD的儿童的家庭成员参加。通过在这两天提供核心和分组会议，我们将能够解决供应商，患者和家庭的教育需求。我们的目标是为医疗保健提供者和患有SCD的个人和家庭提供互动和沟通的机会。最后，我们将测量医疗保健提供者对SCD患者的态度，以及他们在会议前、会议结束时和会议结束后对SCD的了解。