Informed Consent and Assent for Spina Bifida Surgical Procedures

2010

Children and youth with spina bifida often undergo numerous surgical procedures to correct, ameliorate or modify the physical problems associated with their spina bifida. For several years, in our research and clinical work with transition age youth, we hear a number of different stories about their experience with the consent/assent procedures for surgical procedures. These particular experiences spurred us to learn more about the state of practice pertaining to the informed consent and assent process in spina bifida programs nationwide. To better understand what spina bifida programs are doing to obtain consent and assents for surgical procedures from parents/guardians and children and youth with spina bifida, we have developed a survey tool to obtain this information. To date, not much is known about the process of obtaining consents and assents from children and youth undergoing surgical procedures including those with spina bifida. Answers to this survey will help identify what is currently being done in spina bifida program nationwide. The information gathered will provide insight on the current status of consent and assent procedures in spina bifida programs nationwide.

Performing Research or Evaluation

Health-Related Activities

Professionals and Para-Professionals

Racial or Ethnic Minorities

National

N/A