Understanding Intimate Health in Adults with Spina Bifida

Spina Bifida (SB) is a condition that can make it tough for adults to understand and manage their sexual and reproductive health. This lack of knowledge often leads to problems like unintended pregnancies, missed chances to pursue their health goals, and even increased risk of abuse. To tackle this, a new survey was created to assess five key areas of sexual and reproductive health in adults with SB. The survey was developed with input from experts and people with SB. It focuses on areas like sexual knowledge, practices, safety, history of abuse, and self-confidence in managing sexual health. The goal was to create a reliable tool that could be used in both research and clinical settings. The process involved a lot of feedback. First, experts reviewed the survey items to ensure they were clear, relevant, and comprehensive. Then, adults with SB were interviewed to make sure the survey was easy to understand and accept. This back-and-forth process helped refine the survey until it met the necessary standards. The survey covers five important domains. These include sexual knowledge and education, sexual practices, safety and risk factors, history of abuse, and self-efficacy. Self-efficacy is a big deal here. It's about believing in one's ability to handle sexual health challenges. This concept is crucial for behavior change, especially for those with physical disabilities. The final survey includes 100 items that were agreed upon by a panel of experts. This panel consisted of urologists, developmental pediatricians, nurses, and other specialists. The survey aims to assess baseline knowledge, identify risky behaviors, and screen for sexual abuse. It's a tool that can help adults with SB take control of their sexual health. However, it's important to note that while the survey is a step in the right direction, it's just one piece of the puzzle. Education and support are also crucial. Adults with SB need access to comprehensive sexual health education and resources to make informed decisions about their bodies and their lives.