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Best Practices Guidelines for Standard of Care in PWS
Edited by Janice Forster, MD
Published by Hubert Soyer, PhD and Norbert
As caregivers, parents, educators, and health professional
that care for a person or persons with PWS we are fortunate to have a new
groundbreaking guideline and standard of care manual. The International PWS
Organization (IPWSO) with delegates from 81 member nations has created a must
read for everyone. Inspired by the vision and memory of Pam Eisen (past IPWSO
President), PWS caregivers from around the globe gathered in Germany for two
conferences to create a global standard of care and best practices model.
The book includes highly technical, thorough presentations
and abstracts as the basis for workgroup discussions. There were 13 workgroups
that completed a Best Practices Guideline in each discipline. It was accepted
that PWS cuts across so many different aspects of the biological and behavioral
sciences that no one person can have all the knowledge. This is an important
realization for anyone who cares for an individual with PWS! Those who face the
daily challenges of giving people with PWS the opportunity to develop their full
potential and live a good life now have an amazing resource.
Over 30 people contributed to the final documents including
group home administrators, educators, parents, and medical professionals. The
guides were developed by each group to represent a collaboration of best
practices in each aspect of caring for a person with PWS throughout their life.
The workgroups developed the following guidelines for best practices:
- Adult living environments. The debate over whether
persons with PWS should live with only others with PWS. A recipe for a PWS
- Communicating with people with PWS. Strategies to deal
with speech and language deficits, cognitive rigidity, and emotional
- Neurological, psychological, and cognitive aspects of
behavior. Strategies and interventions for the best possible outcomes.
- Fitness, sports and motivation. Types of exercise and
- Training for teachers. Dealing with the typical types
of behaviors seen in the classroom and the PWS learning profile. Creating a
smoother day and maximum learning.
- Nutrition. The “Red, Yellow, Green” system. Special
problems providers face when instituting diet plans.
- Crisis management. How a crisis evolves, how to manage
it, and how to avoid it.
- Communication between caregivers and family. Trust and
honesty in the relationship is key.
- Environmental structure of work. Individuals need the
proper emotional and behavioral supports to be successful in a work
- Psychological aspects of PWS. The psychologist can
play a major role in the care of persons with PWS.
- Interpersonal relationships. How to facilitate the
development of interpersonal relationships.
- Behavior management. Specific crisis and behavior
management methods. A collaboration of more than 57 participants.
- Environmental structure for living. Optimal success
depends on the supports in place.
- Medical checklist. Individuals with PWS should have a
checkup each year.
The book is dedicated to the memory of Pam Eisen. The
conferences were made possible through a grant from the Alfried Krupp von Bohlen
und Halbach-Stiftung. This book is a new “must read” for all those who care for
a person (s) with PWS. Thank you to all the participants and contributors. It is
truly an amazing work.