Parents as the Primary Sexuality Educators for Their Young Adults With Down Syndrome
|ClinicalTrials.gov Identifier: NCT03135236|
Recruitment Status : Active, not recruiting
First Posted : May 1, 2017
Last Update Posted : April 9, 2018
By integrating sexuality and disability literatures, theories, and research methodologies, this study aims to: 1) contribute to the limited knowledge professionals have of parents as the primary sexuality educators; 2) create a resource for parents in order to be sexuality educators for their young adults with I/DD; and 3) evaluate the effectiveness of the Home B.A.S.E. for Developmental Disabilities Curriculum.
In order to meet the objectives the study seeks to answer the following questions:
- What is the effectiveness of a sexuality education workshop for parents of young adults with DS on improving the self-efficacy and attitudes around sexuality and healthy relationships for young adults with DS as well as increase the parent-child communication on sexuality topics?
- What are parents' concerns that impact their ability to be the primary sexuality educators for their young adults with DS? It is proposed that parent confidence and comfort talking about sexuality topics with their young adult with Down syndrome will increase thereby increasing the parent-child communication as a result of this study.
|Condition or disease||Intervention/treatment||Phase|
|Down Syndrome Intellectual Disability Sexuality Parent-Child Relations||Behavioral: Parent training||Not Applicable|
|Study Type :||Interventional (Clinical Trial)|
|Estimated Enrollment :||30 participants|
|Intervention Model:||Single Group Assignment|
|Masking:||None (Open Label)|
|Official Title:||Parents as the Primary Sexuality Educators for Their Young Adults With Down Syndrome: The Effectiveness of a Family-based Training|
|Actual Study Start Date :||March 6, 2017|
|Actual Primary Completion Date :||September 30, 2017|
|Estimated Study Completion Date :||June 1, 2018|
Experimental: Parent training
All registered participants will participate in a series of trainings (3 separate) on sexuality education.
Behavioral: Parent training
Participants will attend 3 trainings. There will be a pre-test before training 1 and an initial post-test after training 3. There will be a final post-test 1 month after the final training.
- Pre-survey, post-survey, and final post-survey [ Time Frame: 15-20 minutes ]A paper survey will be completed before training 1 that gathers quantitative data that will address attitudes, self-efficacy, and behaviors of the parents in attendance. The survey will also be completed at the end of training 3 and then mailed to the participant to complete 1 month after the final training. The quantitative data will be used to measure a change in the attendees' attitudes, confidence, and behaviors before and after the proposed intervention. Data will be analyzed using SPSS.
- Qualitative data [ Time Frame: 5-15 minutes ]Qualitative data will be collected at the end of the first and second training session with two to three take home open-ended questions for each participant to answer as well as after the training is over with open ended questions on the initial follow-up survey. Structured phone interviews will be completed with a small sample of the participants after the one month follow-up paper survey. Answers and interview questions will be transcribed, coded, and themes will be established.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03135236
|United States, Illinois|
|Advocate Adult Down Syndrome Center|
|Park Ridge, Illinois, United States, 60068|
|Principal Investigator:||Katie Frank, PhD, OTR/L||Advocate Healthcare|