Standards of Care & Best Practice Guidelines

Edited by Janice Forster, MD

Published by Hubert Soyer, PhD and Norbert Hodebeck-Stuntebeck

(photo shows gift-giving at a PWS specialised home in Bad Oeynhausen, Germany)

As caregivers, parents, educators, and health professionals who 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 90 member nations has created a "must read" for everyone. Inspired by the vision of Pam Eisen (past IPWSO President), PWS caregivers from around the globe gathered in Germany for two consecutive years (2008-9) at specialsed 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 group home.
Communicating with people with PWS. Strategies to deal with speech and language deficits, cognitive rigidity, and emotional dysregulation.
Neurological, psychological, and cognitive aspects of behavior. Strategies and interventions for the best possible outcomes.
Fitness, sports and motivation. Types of exercise and motivation techniques.
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 environment.
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.