Experiences of Bowel Self-Management in Adults with Spina Bifida: A Qualitative Descriptive Study

项目概要/摘要 脊柱裂（SB）是美国最常见的先天性神经管缺陷， 每年都有新生儿出生，并导致终身残疾。脊柱裂的一个高度致残的方面是神经源性肠 功能障碍，这需要终身自我管理（SM）独立或与照顾者一起。肠 成人SB患者的SM非常复杂，难以实现持续的粪便排泄。有 对尝试肠道SM的这一人群几乎没有支持，这一领域的研究明显不足 即使未管理的肠功能障碍导致不良结果，例如大便失禁，便秘， 尿失禁、尿路感染、分流器故障、皮肤破裂、痔疮、肛裂， 丧失社会和工作机会，感到羞耻、无助和社会孤立。没有适当 肠SM和适当的临床医生的支持，神经源性肠功能障碍具有显著的， 对生活质量的毁灭性影响。目前迫切需要解决成人SB患者的肠道SM，因为这一领域 SM的诊断是脊柱裂诊断中最重要的挑战之一。尤其如此 对于西班牙裔人口和保险不足的人，他们的肠道SM相关不良风险增加， 成果。本研究的目的是描述成人SB从事肠道SM的经验 从他们的角度来看。因此，具体的目的是描述成人SB患者的肠道SM经历， 研究问题是：1）当从事肠道SM时，SB成年人面临什么样的挑战？（二） 成人SB患者使用什么样的肠道SM策略？3)什么是肠道SM的经验，保险不足， 西班牙成年人SB？定性描述性设计，使用20-30名英语和西班牙语样本 与SB交谈的成年人将通过 印第安纳州大学健康中心莱利成人脊柱裂诊所 莱利儿童医院 ，脊柱裂协会，和脊柱裂Facebook的肠道管理 使用纸质和数字传单的团体。所有材料都将以英文和西班牙文提供。兴趣 参与者将被引导至在线链接，以了解有关研究的更多信息，以电子方式提供知情同意书， 填写一份人口统计调查表我将联系参与者，安排一个有口译员在场的虚拟面试 讲西班牙语的与会者。访谈将被记录，转录，并使用Sandelowski的分析 数据准备和分析方法。这项研究的结果将指导未来的研究，包括 开发和测试公平的以患者为中心的干预措施，以改善肠道SM和生活质量， 我已经与她的赞助商密切合作，制定了一个严格的培训计划，将提供一个 为她的论文和作为护理科学家的长期专业发展奠定了坚实的基础。她的训练 目标是：1）深入了解SB成人的肠道SM; 2）获得定性分析的专业知识。 描述性方法; 3）获得拨款写作的专业知识; 4）展示研究成果并从事专业工作 发展和联网活动; 5）提交稿件供出版。

Project Summary/ Abstract Spina bifida (SB) is the most common congenital neural tube defect in the US, occurring in more than 1,400 births each year and resulting in lifelong disability. A highly disabling aspect of spina bifida is neurogenic bowel dysfunction, which requires lifelong self-management (SM) independently or together with a caregiver. Bowel SM in adults with SB is incredibly complex, making it difficult to achieve sustained fecal continence. There is little support available for this population attempting bowel SM and this area is remarkably under researched even though unmanaged bowel dysfunction leads to poor outcomes such as fecal incontinence, constipation, urinary incontinence, urinary tract infections, shunt malfunctions, skin breakdown, hemorrhoids, anal fissures, loss of social and work opportunities, and feelings of shame, helplessness, and social isolation. Without proper bowel SM and support from appropriate clinicians, neurogenic bowel dysfunction has a significant and devastating impact on quality of life. There is a critical need to address bowel SM in adults with SB, as this area of SM is one of the most important challenges associated with a spina bifida diagnosis. This is especially true for the Hispanic population and the underinsured who are at increased risk for poor bowel SM-related outcomes. The purpose of this study is to describe the experiences of adults with SB engaging in bowel SM from their perspectives. Thus, the specific aim is to describe the bowel SM experiences of adults with SB and the research questions are: 1) What are the challenges adults with SB face when engaging in bowel SM? 2) What bowel SM strategies do adults with SB use? 3) What are the bowel SM experiences of underinsured and Hispanic adults with SB? A qualitative descriptive design using a sample of 20-30 English and Spanish speaking adults with SB will be recruited through the Riley Adult Spina Bifida Clinic at Indiana University Health Riley Hospital for Children , the Spina Bifida Association, and the Bowel Management for Spina Bifida Facebook group using both paper and digital fliers. All materials will be available in both English and Spanish. Interested participants will be directed to an online link to learn more about the study, provide consent electronically, and fill out a demographic survey. I will contact participants to set up a virtual interview with an interpreter present for Spanish speaking participants. Interviews will be recorded, transcribed, and analyzed using Sandelowski’s method for data preparation and analysis. Results of this study will guide future research, including the development and testing of equitable patient-centered interventions to improve bowel SM and quality of life in adults with SB. I have worked closely with her sponsors to develop a rigorous training plan that will provide a solid foundation for her dissertation and long-term professional development as a nurse scientist. Her training goals are to: 1) develop in-depth knowledge of bowel SM in adults with SB; 2) gain expertise in qualitative descriptive methods; 3) gain expertise in grant writing; 4) present research findings and engage in professional development and networking activities; and 5) submit manuscripts for publication.