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

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.