Down Syndrome Clinical Trial
Official title:
Parents as the Primary Sexuality Educators for Their Young Adults With Down Syndrome: The Effectiveness of a Family-based Training
NCT number | NCT03135236 |
Other study ID # | AdvocateHC |
Secondary ID | |
Status | Completed |
Phase | N/A |
First received | |
Last updated | |
Start date | March 6, 2017 |
Est. completion date | June 1, 2018 |
Verified date | June 2018 |
Source | Advocate Health Care |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Interventional |
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:
1. 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?
2. 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.
Status | Completed |
Enrollment | 13 |
Est. completion date | June 1, 2018 |
Est. primary completion date | September 30, 2017 |
Accepts healthy volunteers | Accepts Healthy Volunteers |
Gender | All |
Age group | N/A and older |
Eligibility |
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 |
Country | Name | City | State |
---|---|---|---|
United States | Advocate Adult Down Syndrome Center | Park Ridge | Illinois |
Lead Sponsor | Collaborator |
---|---|
Advocate Health Care |
United States,
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. — View Citation
Raffaelli M, Bogenschneider K, Flood MF. Parent-teen communication about sexual topics. J Fam Issues. 1998 May;19(3):315-33. — View Citation
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Pre-survey, post-survey, and final post-survey | 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. | 15-20 minutes | |
Secondary | Qualitative data | 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. | 5-15 minutes |
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