Advisor(s)
Donald Lein
Committee Member(s)
Brandon Rocque
Carmen Tong
Courtney Streur
Jeffrey Blount
Nataliya Ivankova
School
School of Health Professions
Document Type
Dissertation
Department (new version)
Health Professions
Date of Award
1-6-2025
Abstract
Adults with spina bifida (SB) face significant sexual and reproductive health (SRH) challenges, including knowledge gaps, limited access to services, and increased vulnerability to abuse. Sexual health is critical for this population, as most now live into adulthood. By age 20, many individuals with SB are sexually active, and over 90% express a desire for sexual activity. However, only 5% have discussed SRH with a healthcare provider, leading to sexual dysfunction, low contraception use, and inadequate SRH knowledge. Despite guidelines from the Spina Bifida Association (SBA) advocating for patient-centered SRH communication, healthcare providers’ lack of training and discomfort in having these discussions hinder effective implementation, resulting in low SRH literacy in this population. My research includes three studies to address these gaps by developing and validating a survey to assess SRH knowledge, practices, and self-efficacy in adults with SB. The first study began with focus groups with clinicians, parents, and adults with SB, plus a targeted literature review, to develop a comprehensive SRH survey. This draft was piloted locally followed by in-depth interviews with four participants to gather additional feedback. These insights guided the second study, which employed a modified Delphi method and cognitive interviews to establish content validity across five SRH domains: sexual knowledge, practices, safety, abuse history, and self-efficacy. The Delphi study achieved consensus with strong content validity for all items (CVI = 0.82-0.95), ensuring that the survey comprehensively addressed each SRH domain. Cognitive interviews with adults with SB confirmed that the survey was well-understood and accepted, requiring only minimal revisions, further supporting its functionality and clarity in a clinical setting. The third and final study focused on psychometrically evaluating the survey, confirming strong internal consistency for self-efficacy scales related to communication with partners (α = 0.912) and healthcare providers (α = 0.958). However, the knowledge scale showed limited internal consistency (α = 0.444), suggesting the need for further refinement in assessing SRH knowledge. Together, these studies have contributed to the development of a valid and reliable survey to assess SRH in adults with SB, with the goal of improving SRH literacy, care, and outcomes in this population.
ProQuest ID
Recommended Citation
Hopson, Betsy, "The Development Of A Valid And Reliable Survey To Assess Sexual And Reproductive Health Knowledge, Practices, Beliefs, And Risk For Abuse In Adults With Spina Bifida" (2025). All ETDs from UAB. 7274.
https://digitalcommons.library.uab.edu/etd-collection/7274
