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

项目摘要/摘要 脊柱裂(Spina Bifida，SB)是美国最常见的先天性神经管缺陷，发生在1400多人中 每年出生的婴儿，导致终生残疾。脊柱裂的一个高度致残的方面是神经源性肠道。 功能障碍，需要独立或与照顾者一起进行终身自我管理(SM)。肠道 在患有SB的成年人中，SM非常复杂，因此很难实现持续的粪便控制。的确有 对尝试肠道SM的人群提供的支持很少，这一领域的研究明显不足 即使不加控制的肠道功能障碍会导致诸如大便失禁、便秘、 尿失禁，尿路感染，分流功能障碍，皮肤破裂，痔疮，肛裂， 丧失社交和工作机会，感到羞愧、无助和社会孤立。没有适当的 肠SM和适当临床医生的支持下，神经原性肠功能障碍有显著和 对生活质量的毁灭性影响。迫切需要解决成人SB患者的肠道SM问题，因为这一领域 脊髓型颈椎病是诊断脊柱裂最重要的挑战之一。这一点尤其正确 对于西班牙裔人口和保险不足的人来说，他们患上肠道SM相关疾病的风险更高 结果。这项研究的目的是描述成人SB进行肠道SM的经历 从他们的角度来看。因此，具体的目的是描述患有SB和Sb的成年人的肠道SM经历 研究问题是：1)成人SB患者在进行肠道SM时面临哪些挑战？2) 患有SB的成年人使用什么肠道SM策略？3)保险不足和 西班牙裔成年人和某人在一起？使用20-30个英语和西班牙语样本的定性描述性设计 与某人交谈的成年人将通过 印第安纳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肠道管理Facebook 同时使用纸质和数字传单的小组。所有材料都有英文和西班牙文两种版本。感兴趣 参与者将被定向到一个在线链接，以了解有关该研究的更多信息，并以电子方式提供同意，以及 填写一份人口统计调查。我将与与会者联系，安排一名在场翻译进行虚拟面试 对于会说西班牙语的参与者。采访将被记录、转录和分析，使用桑德洛夫斯基的 数据准备和分析的方法。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 成年人与某人在一起。我与她的赞助商密切合作，制定了一项严格的培训计划，将提供 作为一名护士科学家，为她的论文和长期的职业发展奠定了坚实的基础。她所受的训练 目标是：1)在患有SB的成人中发展对肠道SM的深入了解；2)获得定性方面的专业知识 描述性方法；3)获得拨款撰写方面的专业知识；4)展示研究成果并从事专业工作 发展和联网活动；以及5)提交手稿以供出版。

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.