Parents as the Primary Sexuality Educators for Their Young Adults With Down Syndrome

NCT03135236 | Completed

• 1 other identifier: AdvocateHC
• Study Type: interventional
• Target: 13
• Locations: 1 country
• Sites: 1

Brief Summary

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. 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. 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.

Conditions

Down Syndrome; Intellectual Disability; Sexuality; Parent-Child Relations

Keywords

Parent training; Family education; Young adults; Down syndrome; sexuality

Outcome Measures

Primary Outcomes (1)

• 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 Outcomes (1)

• Qualitative data

  5-15 minutes

Study Arms (1)

Parent training

EXPERIMENTAL

All registered participants will participate in a series of trainings (3 separate) on sexuality education.

Behavioral: Parent training

Interventions

Parent training BEHAVIORAL

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.

Parent training

Eligibility Criteria

• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

• Parents of young adults with Down syndrome ages 20-30.
• Be able to communicate in English

You may not qualify if:

• 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

Sponsors & Collaborators

• Wake Forest University Health Sciences: lead

Study Sites (1)

Advocate Adult Down Syndrome Center

Park Ridge, Illinois, 60068, United States

Location

Related Publications (4)

• Bundy, M. L., White, P.N. (1990). Parents as sexuality educators: A parent training program. Journal of Counseling & Development, 68: 321-323.

  BACKGROUND

• 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.

  BACKGROUND

• 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.

  PMID: 16115575 BACKGROUND

• 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.

  PMID: 12295941 BACKGROUND

MeSH Terms

Conditions

Down Syndrome; Intellectual Disability; Sexuality

Condition Hierarchy (Ancestors)

Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Abnormalities, Multiple; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Chromosome Disorders; Genetic Diseases, Inborn; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Neurodevelopmental Disorders; Mental Disorders; Sexual Behavior; Behavior

Study Officials

• Katie Frank, PhD, OTR/L

  Advocate Healthcare

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: TREATMENT
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 27, 2017
• First Posted: May 1, 2017
• Study Start: March 6, 2017
• Primary Completion: September 30, 2017
• Study Completion: June 1, 2018
• Last Updated: October 4, 2024

Record last verified: 2018-06

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)