- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT03135236
Parents as the Primary Sexuality Educators for Their Young Adults With Down Syndrome
Parents as the Primary Sexuality Educators for Their Young Adults With Down Syndrome: The Effectiveness of a Family-based Training
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.
Study Overview
Status
Intervention / Treatment
Detailed Description
Study Type
Enrollment (Actual)
Phase
- Not Applicable
Contacts and Locations
Study Locations
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Illinois
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Park Ridge, Illinois, United States, 60068
- Advocate Adult Down Syndrome Center
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-
Participation Criteria
Eligibility Criteria
Ages Eligible for Study
- Child
- Adult
- Older Adult
Accepts Healthy Volunteers
Genders Eligible for Study
Description
Inclusion Criteria:
- Parents of young adults with Down syndrome ages 20-30.
- Be able to communicate in English
Exclusion Criteria:
- Parents of young adults between the ages of 20 and 30 without Down syndrome
- Parents of individuals with Down syndrome younger than 20 or older than 30.
- Parents unable to attend 3 training sessions.
- Not fluent English communicators.
- Any vulnerable populations including pregnant women, neonates, prisoners, children, cognitively impaired adults, or adults unable to consent
Study Plan
How is the study designed?
Design Details
- Primary Purpose: Treatment
- Allocation: N/A
- Interventional Model: Single Group Assignment
- Masking: None (Open Label)
Arms and Interventions
Participant Group / Arm |
Intervention / Treatment |
---|---|
Experimental: Parent training
All registered participants will participate in a series of trainings (3 separate) on sexuality education.
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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.
|
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
---|---|---|
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.
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15-20 minutes
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Secondary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
---|---|---|
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.
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5-15 minutes
|
Collaborators and Investigators
Sponsor
Investigators
- Principal Investigator: Katie Frank, PhD, OTR/L, Advocate Healthcare
Publications and helpful links
General Publications
- Bundy, M. L., White, P.N. (1990). Parents as sexuality educators: A parent training program. Journal of Counseling & Development, 68: 321-323.
- Frank, K. E. (2016). Parents as the primary sexuality educators for their adolescents with Down syndrome. (Doctoral dissertation). University of Illinois at Chicago, Chicago, IL. Retrieved from Indigo at http://hdl.handle.net/10027/21214.
- Klein JD, Sabaratnam P, Pazos B, Auerbach MM, Havens CG, Brach MJ. Evaluation of the parents as primary sexuality educators program. J Adolesc Health. 2005 Sep;37(3 Suppl):S94-9. doi: 10.1016/j.jadohealth.2005.05.004.
- Raffaelli M, Bogenschneider K, Flood MF. Parent-teen communication about sexual topics. J Fam Issues. 1998 May;19(3):315-33. doi: 10.1177/019251398019003005.
Study record dates
Study Major Dates
Study Start (Actual)
Primary Completion (Actual)
Study Completion (Actual)
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Actual)
Study Record Updates
Last Update Posted (Actual)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Additional Relevant MeSH Terms
Other Study ID Numbers
- AdvocateHC
Plan for Individual participant data (IPD)
Plan to Share Individual Participant Data (IPD)?
IPD Plan Description
Drug and device information, study documents
Studies a U.S. FDA-regulated drug product
Studies a U.S. FDA-regulated device product
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
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