Utah Healthy Relationships Matt Jacobsen Jenny Ramirez Margaret

Utah Healthy Relationships Matt Jacobsen, Jenny Ramirez, Margaret Kluthe, Cindy Smith, & Danielle Cannon Advisors: Paula Peterson, APRN and David Derezotes, Ph. D.

Utah Family Voices (Jenny) • In 2008, a project designed to assist youth and young adults with disabilities learn about the potential for having healthy romantic and sexual relationships was started by a parent group created by Dr. Terashima, a Salt Lake City pediatrician. • The parents along with a few young adults with special health care needs, have compiled information to share with families of and youth with special health care needs.

Project Aims (Jenny) • Through the production of this film we aim to give a “voice” to youth and young adults with disabilities about sexuality and relationships and to help professionals and parent talk to young people with disabilities regarding these topics.

Research Behind the Film (Danielle) • Youth and young adults with special needs have revealed that the topic of romantic and sexual relationships was not discussed with them by their parents, health care team, or schools. • Youth with disabilities and their families may not know how to address key issues because: • They are uncertain of what children know or should know • Inability to answer questions • Confusion, anxiety, and ambivalent attitude towards sexuality of their children • Equate learning with intentions to perform sexual activities • Child may have difficulty learning • Limited genital and other tactile sensations • Communication problems • Uncertainty about their sexual function and fertility status • May have reading levels that limit access to information • Fewer chances to observe, develop, and practice appropriate social and sexual behavior

The Film (Matt) • The final film will be 45 to 55 minutes, consisting of minivignettes (each about 3 -8 minutes long) of young adults with disabilities, both single and married. Filmed segments include personal vignettes and a group panel. • The film includes insights and experiences on: • Abuse and Boundaries • Social Skills • Dating Skills • Parents Perspective of Growing Up • Insecurities/Concerns • Love • Hygiene • Sexual Education

Participants (Matt) • Their ages ranged from 12 -37 years old and included 6 males and 4 females. The following special health care needs are represented by participants: • • • Cerebral Palsy Craniofacial Anomaly Attention Deficit Hyperactivity Disorder Hearing Impaired Spina Bifida Autism Cystic Fibrosis Undiagnosed Syndrome Severe Cardiac Anomaly

Results (Matt) • Completed 8 interviews • 6 individuals with special health care needs • 2 parents of individuals • Wide range of topics covered and experiences • Clips from Interviews

Getting the Word Out (Cindy) • Upon completion of the film we anticipated that it will be posted on several reputable websites, including • • Utah Family Voices Utah Parent Center Medical Home Portal Easter Seals • Future research projects could address the popularity and the effect of the film through monitoring of web site hits and survey studies

Future Directions (Margaret) • Translation into other languages • Different cultural views or other perspectives on disabilities • Expanding and dividing different disability areas, such as physical disabilities, mental disabilities, autism, etc. • Evidence based training course that teaches social, friendship and/or dating skills to those with disabilities

Questions & Answers

Thoughts and Feedback: Matt • Highlights from URLEND • Working with Jodi and the participants of the video • Clinical rotations • Observing other practitioners • Understanding the patient experience • In-home visits • What I will take away from URLEND • More empathy for the families that I serve • More sensitivity in the way I interact with and address those with special health care needs. • More understanding of the services available and ability to refer

Thoughts and Feedback: Matt Recommendations: • Training on patient interaction and parent expectations from health care providers • Could be done using a panel format • Individuals and their parents • Would allow us to learn what health care providers have done that are either a hindrance or helpful • Communication • Making treatment decisions • Carrying out treatment: Restraint? • Would help me better meet the expectations and needs of my patients and their families

Thoughts and Feedback: Cindy • Highlights of URLEND: • Getting to know other URLEND Trainees • Learning a wealth of information about a wide area of subjects • PDC's • Take Aways: • Greater desire to help families with children with disabilities • Desire to learn more about Autism • Recommendations: • Have more repetition of certain things • Make sure reading and assignments are made known three days in advance

Thoughts and Feedback: Danielle • Highlights: • Clinical Experiences • Interactions with Individuals with Disabilities, Parents, and Families • PDC’s and Utah Family Voices Group • Knowledge gained about a variety of Disabilities, especially Autism • Recommendations: • Teamwork - Communication/Coordination between team members and faculty • To Implement: • South Main: Assign/decide a leader and make assignments. Also have a way of giving notice to group 2 weeks before, so all group members contacted and technology situations figured out. • Leadership: Assign/decide a leader for information to funnel through to group members and project advisors. Group emails were good, but confusing. (Example PDC) • To Become a Better Leader: • South Main & Leadership: People will know what role they are taking in a group and therefore all group members can participate. This helps everyone become a leader by taking charge of certain areas, instead of confusion in which one

Thoughts and Feedback: Margaret Highlights: • Getting to know other URLEND trainees and hear about what they are doing and share resources with them. • The autism lectures and clinics have been fantastic and motivating! • I have learned so much from both the lectures and clinics! Suggestions: • Strengthen the section on physical disabilities. • I have learned a lot about physical limitations and mobility options from spina-bifida clinic and through helping my husband, who’s ability to walk distances and climb stairs has been reduced. • Adding an additional 30 minute lecture on the topic of mobility limitations, its challenges and tools for increasing access would improve the knowledge of many URLEND trainees, enabling them to be advocates and advisers for increased mobility.

Changes Suggested for URLEND Program 2013 -2014 – Margaret Earlier Instructions on requirements for visiting PCMC Clinics • URLEND participants who are retuning to the university setting after a years of professional work may need more time to obtain vaccine verification or obtain lab tests, such as obtaining a physician’s order for lab tests and get these done to prove immunization status. • This could be implemented by a pre-seminar (July or early August) email detailing the requirements could be sent out ahead of time, so that pre-requisite activities could be completed by the August workshop. • This would help leadership skills by enabling some participants (who are not current students) to move more quickly into planning their clinic schedules, and allow more time at the end of the program for finishing leadership papers.

Thoughts and Feedback: Jenny • Highlights: • Clinical visits: Being able to learn about different clinics and the type of work they do with individuals with a specific disability or disabilities. • Other URLEND members: Being able to develop relationships with other professionals for the future. • Family-centered approach is very important for individuals with disabilities and that applies to my leadership team’s project. • Recommendations: • URLEND Seminars: Calling on people who aren’t involved. • To implement that: Inform each lecturer beforehand to call on people who aren’t involved. • To become a better leader: People need to be involved more and they’ll benefit more that way- sharing their opinions and developing confidence in their abilities as a leader.