Informed Consent and Assent for Children and Youth with Spina Bifida Undergoing Surgical Procedures

2011

The purpose of this study entitled is to investigate the informed consent/assent procedures that are employed for children and youth with spina bifida who undergo surgical procedures. The aim of the study is to understand the processes used by spina bifida centers nationalionwide to obtain informed consent from parents and assent from children and youth with spina bifida who have not attained the age of majority for intrusive surgical procedures. All subjects from whom data will be collected are 18 years and older. Survey questionnaires will be distributed to 166 spina bifida centers nationwide that provide services and supports to children and youth with spina bifida. The questionnaires will be sent to Center Directors or their designated representatives. Center Directors or their designated representatives will be asked to complete the survey questionnaire and return it in a self addressed stamped envelope that will accompany the questionnaire. Follow up letters, with a copy of the original cover letter and questionnaire will be sent at 4 and 8 weeks following the mailing of the original correspondence that included the cover letter and survey questionnaire if the survey questionnaire is not received.

Performing Research or Evaluation

Health-Related Activities, Other

Not Applicable

Racial or Ethnic Minorities, Disadvantaged Circumstances, Geographic Areas, Empowerment Zone, Renewal Community, Rural/Remote, Urban, Specific Groups

Single-County, International

N/A