I would like to invite you to participate in a research study on the ‘Relationship between caring for individuals diagnosed with Prader-Willi syndrome (PWS) and caregiver stress’. The results will provide vital information to caregivers, service providers, and policy makers on strategies and supports needed in the care of individuals with PWS.
The survey will take approximately 30 minutes to complete. If you leave the survey without completing it and decide to come back later, you will need to start from the beginning. Because of the time commitment, all participants will have the opportunity to enter a drawing for a chance to receive one of eight $25 Amazon gift cards. To assure anonymity of your responses, at the end of this survey you will be directed to a separate survey form to enter the drawing. This ensures that there is no connection between your survey responses and your contact information.
Below are the requirements to be part of this study:
– are at least 18 years old,
– a family member of an individual diagnosed with PWS (i.e. parent, step-parent, sibling, grandparent, etc.)
– the individual being cared for is at least four years of age,
– the individual is not living in a supported living environment (i.e. supervised group home or supervised apartment).
By right clicking on the link below and opening it, you are agreeing to participate in this research study.
http://survey.az1.qualtrics.com/SE/?SID=SV_eCEbma2boaBbYTb
This study has been reviewed by The University of Mississippi’s Institutional Review Board (IRB). If you have any questions, concerns, or reports regarding your rights as a participant of research, please contact the IRB at (662) 915-7482 or irb@olemiss.edu.
Thank you,
Michael A. Vice
Doctoral Candidate, Health Behavior and Promotion
Department of Health, Exercise Science and Recreation Management
The University of Mississippi
Turner Center 234
662-832-0817
mavice@go.olemiss.edu
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.