The Utah Parent Center receives many requests to distribute or advertise research and research surveys to our constituency through our email list. We have set up this web page to provide links to those opportunities to those who may be interested in participating. Some surveys or opportunities that are provided by our partners or funders may also be sent directly to the email list.
- COVID-19 Input and Your Child’s Needs
- We are looking for family input. We are looking for parents of children 5-12 years old with a disability for an upcoming focus group. We would like your input on how to develop effective communication materials about COVID-19 that meet your child’s needs. This research is sponsored by CDC. Anyone interested may follow the link below to fill out a questionnaire. We will use this information to determine who is eligible to participate in either an upcoming focus group or individual interview on 9/29/22 or 10/5/22: http://www.COVID19educationalmaterials.thehennegroup.com
- Parent Focus Group: DSPD & University of Utah
- DSPD is working with the University of Utah to learn about the unique needs of parents and primary caregivers of children and young adults with intellectual and developmental disabilities. DSPD and the University of Utah will conduct focus groups to discuss (1) the rewards and challenges of caregiving, (2) the programs and services that make caregiving sustainable, and (3) the impacts of caregiving on employment.
- To be eligible for these focus groups, you must have a child or dependent with an intellectual or developmental disability who is between 5 and 25 years old. Space is limited.
- Monday, October 3rd at 1 pm for those with children receiving DSPD services.
- Tuesday, October 4th at 1 pm for those with children who are not receiving DSPD services or who are on the DSPD Waiting List.
- Applied Behavior Analysis (ABA) Services/Therapy Study, Whitworth University, Griffin
The purpose of this survey is to learn from people who have received Applied Behavior Analysis (ABA) services/therapy. A lot of people have strong opinions about ABA, one way or the other. We are conducting a series of studies to amplify the voices of individuals who have received ABA services and the voices of their parents, with the goal of identifying what is working well, and unfortunately, what is not working well for them. Participation is voluntary; you may stop at any time and may skip any question. All responses are anonymous. Choose the survey that applies to you:
Individuals (18+ years) who have received ABA Services
Parents/Guardians of people who have received ABA services
- Understanding Family-Professional Partnerships in Low-Resourced Communities – University of Illinois-Urbana-Champaign
Are you a parent/guardian of a child with a disability in grades K-5 who is enrolled in a public school AND a) receive government assistance such as Medicaid or food stamps, b) you have a high school diploma or lower, c) the primary caregiver in your household is unemployed, OR d) you identify as being from a low-income household. Requirements: Complete the questionnaire and phone/Zoom interview. Receive $30 for participating in this study. Contact Amanda at firstname.lastname@example.org or 815-450-9306.
- Telehealth Delivery of Treatment for Sleep Disturbances in Young Children with Autism Spectrum Disorder – Cleveland Clinic We are recruiting young children (ages 2 up to 7 years) with autism spectrum disorder and sleep disturbances. Participants are randomized either to 5 sessions targeted parent training program for sleep problems or 5 sessions parent education program where they will be provided knowledge relevant to parenting a child with autism. A previously NIH funded study demonstrated the parent training program was superior in improving sleep and bedtime problems. This study is testing whether this holds when delivered via telehealth. All families will be compensated for their time and participation. As both arms of the study offer families support, please consider passing on our brochures to families who have a young child with ASD and sleep problems. The possible benefits of participation in this study are the improvement of the child’s sleep and bedtime behaviors. To be eligible to participate: Child must be between 2 and less than 7 years of age; Child must have a diagnosis of Autism Spectrum Disorder; Child must have bedtime or sleep disturbance. Please contact the research coordinator at 216-448-6392
Measuring Sleep Problems in Children with Autism Spectrum Disorder – Cleveland Clinic, funded by NIHWe are currently looking for parents to participate in an assessment, which we can do remotely. The purpose of this study is to get a better understanding of sleep problems in children with Autism Spectrum Disorder. We will use the information to develop a new measure for sleep problems in children with ASD. The assessment will last for around 3 hours. This research is funded by the National Institute of Child Health and Human Development (NIH). Families may qualify to participate if they have a child with ASD between the ages of 3-12 with a current or history of sleep-related problems (minor or major) and has not started a new medication in the past month. Please contact the research coordinator at 216-448-6392 or at email@example.com.
- Vascular Health and Risk Factors in Children with Down Syndrome
University of Utah – Primary Children’s Hospital, Division of Pedatric Cardiology
A study for children with Down Syndrome between the ages of 10-18 which will help us understand the risk factors for heart attack and stroke affect the blood vessels of children with Down syndrome. This may help us to better understand how to prevent heart attach and stroke in these children in the future. Children who qualify will be seen for a single study visit that lasts about 4 hours at Primary Children’s Hospital. The study will measure the health of the large blood vessels using ultrasound and non-invasive pressure sensors. There will be a blood draw to measure markers of blood lipids, glucose and inflammation. Height, weight and circumference and blood pressure will also be collected. For more information, please contact Andrea Curless at 801-587-9039 or at firstname.lastname@example.org
- Infants Needed for Study at Brigham Young University
Dr. Rebecca Lundwall, Cognitive Development Lab, BYU IRB# X2019-427
We are collecting data from infants who are between 15 and 22 months old and either have: An older, full biological sibling with ASD, or children without a relative with an ASD diagnosis. The study involves a fecal sample, a hair sample, a computer task, and questionnaires. Earn between $40 and $175 depending on the participation category. Please contact email@example.com or by phone at 801-422-5977.
- Support Parent-Adolescent Relationships and Communication (ND-SPARC) Project
The Notre Dame SPARC Project
Over the course of a four-week program, families in the SPARC project get information about the conflict and how it can impact marital, parent-child, and sibling relationships, as well as information on how to resolve conflict and have more productive conversations as a couple and with their typically developing teens.
Participation also includes: Access to research-based information about family communication and conflict, contributing to research by completing surveys and Zoom sessions with our team, and the chance to earn up to $370 for completing the program
Who is eligible to participate? Couples who are married living together with: 1) A typically developing child between the ages
of 10 and 18 AND 2) A Child of any age who has an intellectual or developmental disability.
- The Relationship of Adaptive Clothing on the Social Participation and Self-Esteem of Adolescents with Disabilities
Emalee Brown and Dr. Lacee Boschetto, Utah State University
If your child is between the ages of 13-17, and is someone that fits the criteria of the study population, your child is asked to participate in the study. The study population includes, but is not limited to, the following situations: Currently uses a wheelchair, crutches, braces, or other mobility devices, Currently has a port or colostomy bag, Has other disabilities that affect use of their limbs or torso and/or Has other physical disabilities or impairments that require, or would benefit from, the use of altered or adapted clothing. This survey is online through Qualtrics, and is designed to provide information on clothing, self-esteem, and social participation of adolescents with disabilities or impairments. The survey will take approximately 10 minutes. No follow-up commitment is required. If your child is not physically able to complete the survey by themselves, you may provide assistance in answering the questions. Children that are not mentally capable of forming their own responses are excluded from this study and do not need to participate.
- Care for Utah’s Rare
Abigail Isaac, and I’m a co-creator of the Care for Utah’s Rare movement
Our end goal is to increase funding for disabled children in Utah. Specifically, expanding the reach of the MCCW (Medically Complex Children’s Waiver). According to the Kaiser Foundation, Utah provides support for only 15% of all medically complex children. It is not enough. We plan to put pressure on the state legislature by creating a national movement through social media, and hopefully news networks. As my state representative, Ray Ward said, “They’re not going to do anything unless there is public outcry.” What we need is people who can make noise. We need resources and facts. We would love for medically complex families all over the state to join us. We want people, and our government, to understand that life is hard for us. We want them to understand that there are families who are fleeing our state because they can not afford to keep their children alive here. We’d love for you to follow our account, share our posts, and fill out our survey.
- Interactive Social Behavior Assessments Performed by Parents
Jack Olson and Dr. Opal Ousley, Emory Autism Center at Emory University
The purpose of this study is to answer the question of feasibility for parents to perform interactive social behavioral assessments on their own children. Gathering information from parents leads to a better understanding of the feasibility and workload of social behavioral assessments when performed by parents on their children. This assessment is for parents and their children ages 6-60 months. To participate you will need to have a small ball (3-4 inches) and a child’s board book (2-4 inches). The assessment should take approximately 30 minutes to complete.