Question:
Male, 38 years old, Unknown Subtype
I am an LPN. We currently have an individual with PWS, we are running into several problems, one of the biggest being hygiene. This individual refuses to shower, averaging about 1 weekly. He has a very large, growing rash across his abdominal folds. While we are here to support the individual’s rights, it’s becoming a health scare. This is new over the past few months; hygiene has not always been a problem. He has also faced several changes, such as a new home and new roommates/staff.
Any advice would be appreciated.
Nurse Lynn’s Response:
Thank you for sharing that information. Prader-Willi Syndrome can certainly complicate matters with behaviors around hygiene and self-care, but there are ways to approach this that may help reduce the stress both for the individual and the caregivers involved.
Consistency: People with PWS tend to do better with structured routines. If the hygiene routine (like showering) is set at the same time each day or week, it can help reduce anxiety or resistance. Create a predictable environment where hygiene is a regular part of their day.
Positive Reinforcement: Celebrate small successes with verbal praise or rewards that are meaningful to them. Positive reinforcement works well for motivating individuals with PWS, especially when it comes to behaviors/tasks they find difficult.
Language used: First you shower, then we can (go for a walk, watch a movie etc.). Would you like to take a shower now or in 30 minutes?
Skin Care: Abdominal folds are prone to irritation, especially if hygiene is inconsistent. You might try using barrier creams to help protect the skin while you work on improving hygiene. Try having each shift at the home clean the area, apply creams (if needed) and document is a good way to ensure that that the rash(s) are being properly cared for.
Medical Intervention: Given the severity of the rash, it might be worth discussing the situation with the healthcare provider to ensure there are no underlying infections or consider a dermatological consultation for a professional opinion on care.
Understanding Their Preferences: PWS individuals may resist certain tasks if they feel overwhelmed, embarrassed, or if the task is too difficult. Try to engage the person by discussing the benefits of hygiene in a way that speaks to their interests or comfort.
Involve Them in the Process: Allow them to be part of the decision-making process for their care, even if it’s in small ways—like picking out a favorite soap or selecting the time of day for their shower. Giving them a sense of control can reduce resistance.
Calming Environment: Changes like new roommates or staff can increase stress for individuals with PWS. Make sure the environment feels as calming and predictable as possible. Consider introducing the hygiene routine in a low-stress way, such as using soothing music or soft lighting during the shower to create a more relaxing experience.
Staff Consistency: Since they have new staff and roommates, building trust with them might take time. Consistent staff members who know the individual’s triggers and needs may help them feel safer and more willing to engage in the process.
Behavioral Approaches: If the resistance to hygiene has become a challenging behavior, it might be helpful to work with a behavior specialist. They can develop strategies to address the underlying issues causing the resistance.
Resources:
Behavior-Management-Guidelines.pdf
How-does-a-Person-with-PWS-Think.pdf
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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.